What Happened...

Many people have been asking what actually happened. Over the past few weeks we started with a partial story and have been piecing things together. Some of you that have talked to us on the phone many have parts of the story, but for all that are curious here is the whole story.

Shortly after Casey's first birthday we took her in for her 1 year vaccinations. One of these shots was a chicken pox vaccine. Everything seemed to be fine. Exactly 10 days later I noticed what looked like bug bites on Casey's leg and she spiked a pretty high fever. The fever triggered a seizure. Casey has tonic seizures, but this was the first seizure I had ever seen. It was not violent, just the first physical seizure she had. I calmed her down and we got through it. As soon as I could I called her neuro to let him know what had happened. The seizure medicine Casey has been on since February is called Valproic Acid. When he heard about the seizure he increased her medicine by about 30-40%. We had gotten the level checked twice since the increase and both times showed the acid to be at a therapeutic level. At the same time we found out that it is a common reaction for kids to get fevers and bumps on the shot site 10-14 days after the shot. It was unfortunate that the fever triggered a seizure, but the fever and bumps were nothing to be concerned about.

So we had been giving Casey the increased dosage since early May and everything seemed fine. We started doing regular breathing treatments around the same time. These treatments were to help strengthen and heal her lungs from the pneumonia and ARDS that Casey had in March. The treatments seemed to be doing a great job. Her baseline saturation was in the mid 90's and we never had to give her oxygen.

On June 3rd (Sunday) Casey woke up in a great mood. She was doing well and then out of no where around noon she had a really bad reflux. We suctioned as much as we could and tried to get her to calm down. Normally this takes anywhere from 10 minutes to 2 hours to get her back to a calm state. However after about an hour she was still very worked up and then we started to see blood when we suctioned her. We had seen small amounts of old dried blood before, but this was very different. We were seeing a significant amount of fresh blood. We plugged her in and she was saturating (maintaining oxygen) well, but her heart rate was very high. We spent the rest of the evening trying to get her heart rate under control and suctioning the blood. When I took her to bed her heart rate was too high to do our normal breathing treatment so instead she and I just went to bed. Around 11-12 she still had a very elevated heart rate and we were still suctioning blood. We were getting very concerned. We plugged her back in and saw that her saturation was plummeting. Anywhere from 90-100% is healthy, she was in the 40-50% range. This was pretty scary and not like her at all. We hooked up the oxygen and were able to get her saturation into the 80's overnight. Anytime we moved the oxygen she would immediately plummet again. First thing Monday morning Tim and I loaded her up and went to Children's Hospital (where her pulmonary doctor clinics). We spent all day Monday in the ER. With oxygen we were able to keep her in the 80's most of the time. The admitted us that evening and sent us to a room around 7:PM. Overnight she did pretty good. She was 80-90 most of the night. Around 5:AM things took a major turn for the worse. With all the oxygen we could give her she could not stay saturated at all. By 7:AM she was plummeting back into the 40-50 range even with oxygen. The quickly moved her to the ICU and put her on a ventilator (breathing machine). She stayed on the vent for 11 days, and for the first week on the vent she was depending 100% on the machine to breath. The doctors and nurses tried to ween some, but she was just not strong enough. Everyday they did blood work. They noticed when they moved her to the ICU that her platelets were VERY low. When she left UCLA in March she had 250 (on the low end of healthy). Her platelets had fallen to 12. The doctors gave her blood and platelets right away. Even after the transfusion her counts were very low, and falling. The doctors were not sure what was causing this, but had to find the source and fix it.

Platelets are what the body uses to clot. So when you bleed the platelets are what stops the bleeding. Sunday when we suctioned all the blood we now knew why. We didn't know why her platelets were low, but we knew why the bleeding did not stop.

After a few days of trying to figure it out the doctors finally came and said they were pretty much out of ideas, and all they came up with was a long shot. The Valproic Acid she takes for seizures has a rare, but plausible, side affect that causes bone marrow suppression. Being that platelets are created in the bone marrow they wanted to change her meds and see if it would help. If it didn't then we would be facing a long road of blood specialists, bone marrow issues, etc. So everyone was really hoping the meds would be the source. Sure enough, they were. Her platelets quickly rose, and at one point she was over 630. She has balanced out now.

The pulmonary doctor told us that due to the severity of the damage done to her lungs that he believes that she aspirated on blood. Apparently a blood aspiration is MUCH worse than food or secretions. There is a chemical reaction that causes your lungs to basically shut down when blood enters.

Once Casey's platelets came back up she started to make very quick progress. It was like one day she just decided she was tired of being sick. She amazed even the doctors with how strong she is. I have never met anyone stronger than Casey. She really is an amazing little girl.

So, long story short. Casey's chicken pox vaccine caused a fever that triggered a seizure. Then the increased seizure meds led to Casey's platelets dropping. Then when she refluxed we must have scraped her already raw (from reflux and frequent suctioning) throat and caused it to bleed. Due to the platelet issue the bleed was severe and she ultimately aspirated on the blood.

We have Casey on a new seizure med now. We will spend the next month or so working with her neuro to get the med balanced just right, or possibly change it to get her back to a stable seizure free level while maintaining a healthy platelet count. In addition we are spending the next 6 weeks continuing breathing treatments and working with pulmonary to get Casey's lungs as strong and as close to recovered as we can. After 6 weeks she will be considered for surgery. The surgery will be to have her fundo redone (the band around her sphincter that was supposed to stop reflux back when she was just 1 month).

She is so happy to be home, as are Tim and I. Tim's back surgery is scheduled for July 9th. For a while they were going to do Casey's surgery sooner. It would have been tough having her in LA at Children's with Tim here in Santa Monica. Luckily she and I will be here at home while Tim is in the hospital and things should be a little easier. Tim's mom is coming to stay at the hospital with him while my sister is coming to stay at the house with me and Casey. Shortly after Tim's recovery will be about the time we take Casey back in for her surgery. So the next few months are going to be pretty busy here. We will have to take the time now to get lots of rest.

Again, thank you to everyone for all your thoughts and prayers for our little angle. They seem to have helped as she is home and doing well.

We're Home!!!!

We are finally home. This was a really long hard stay but we are all so glad to be back home. Casey was discharged around lunch today and we just finished getting her and all of her stuff settled at the house. She seems to be feeling a lot better. She is very tired (as are we) but overall seems to be happy to be home. I just wanted to say thank you to everyone for all of your well wishes, prayers, etc. It really means a lot to us to know how much people care about and love Casey. I will post more details later, just wanted to let everyone know we are finally and happily home :)

Out of intensive care

Casey is getting much stronger, and was taken off the ventilator and moved out of the intensive care unit. Over the last couple days, she has had an upper GI test so surgery can decide what types of procedures they recommend and how urgently they should be scheduled, since another pneumonia from reflux/aspiration would be devastating. Casey also had an EEG done, as they had to switch her seizure medication while in the ICU, and she is showing some small signs indicating the phenobarbital is not working as effectively as the valproic acid. Based on the results, we may need to switch her seizure medicine again. All 3 of her leg IVs were taken out over the last few days, so she is down to just the one central line in her upper right arm.

Now that we are in a normal room, things are much more comfortable - Casey is in a big bed and we are able to lay next to her, which makes her feel better. Even the nurses have commented on how much better her stats look when Marty is next to her. We hope there are not too many more tests and we will have a plan in the next couple days. In the meantime, Casey can just focus on getting stronger.

Casey has turned the corner

After 10 days in Intensive Care, the doctors have finally used our favorite phrase "turned the corner," letting us breathe a huge sigh of relief that it's when and not if we will be bringing Casey home. Her lungs have continued to recover slowly, and even her platelets have rebounded a bit. The respiratory team is starting to slowly wean her ventilator settings so she can be extubated hopefully within the next week.

We are starting to turn our attention to surgical options to better address Casey's reflux. Most likely she will need to have her fundoplication tightened, and another tube inserted downstream from her stomach into her small intestine. This will allow us to feed larger amounts of food directly into her small intestine without risk of pneumonia from reflux/aspiration. This is typically called a j-tube, whereas currently she has a g-tube. The g-tube would still stay in place for some medicine and for gastric venting to relieve gas pressure. The j-tube care may be harder, but it will be worth it.

In order to have these types of procedures, Casey will need to have a number of GI tests after she is stable enough from her pneumonia, possibly as early as next week. With surgery and a difficult recovery after that, you can see that she will be in the hospital for quite some time.

It was one year ago today that we finally brought Casey home from UCLA Medical Center after being in the NICU for almost 2 months. We are so blessed that she is with us today and has so many people that care for her.

Casey is in critical condition at Children's Hospital

Just a quick post to let everyone who has been calling what has happened with Casey. Last Sunday she had a back reflux on which she aspirated into her lungs. We were not able to get her to recover her breathing or heart rate, and she was coughing up blood, so we took her to Children's Hospital of Los Angeles - this is where we take her for her pulmonary doctors.

After monitoring Casey and seeing that her condition was declining rapidly, they decided to intubate and put her on a ventilator. They also inserted 2 femoral (thigh) central lines for drawing blood and giving medicine.

In addition to the obvious respiratory problems, Casey's platelet count is our main concern. It has been very low the whole time, and even after getting a transfusion, it is continuing to decline. Since bone marrow produces these cells, they are trying to figure out why Casey's bone marrow is not working properly. One reason is a rare side effect of her seizure medication, but it could just be her body not being able to adjust to so much stress at once. She will most likely need another transfusion, but we can not continue that indefinitely, so they have mentioned that something similar to chemotherapy may be needed to wipe out whatever is causing this problem.

Her lungs have improved slightly over the last couple days, sounding a little better and her some subtle differences in her xrays. Unfortunately, her lungs were still quite damaged from her last pneumonia a couple months ago, so her baseline xrays were already quite bad.

They have Casey heavily sedated and comfortable - she is a little swollen from the fluids and medicine, but she has opened her eyes a lot the last couple days and shown other signs of strength, so we are hopeful that she will continue to improve and respond well to all the treatments.

Well, that's all for now - we will try to put an update here about once a week in case we don't get to talk to everyone.

16 Pounds and Growing!

Casey has passed the 16 pound mark. In the past couple weeks she has really been having a growth spurt. She passed 16 a couple days ago and is still going strong. She is getting really long too. When Tim holds her up on his shoulder her feet are already down to his waist. She is going to be so much taller than me.

One of Casey's friends, Gavin, turned one and had his party this morning. We took Casey for a little while. She did really good. The party was outside and she liked hanging out in the fresh air. Tim got Casey and I a nice porch swing to sit in for Mother's day, and we are trying to get her out into the fresh air a little more. She seems to like it, but the wind makes her tear up a little. Gavin's grandmother's had not seen Casey sine we were in the hospital and they were very impressed with how big and strong she looks. Gavin seemed to be having a great time too. He was all done up in pirate clothes and had a very cute pirate cake. He did a great job tearing into his piece.

Yesterday Casey's Feeder Seat came. We put her in it a few times yesterday just to get her used to it. She seems to like it. It comes in different sizes and we ordered the medium. She may have fit in the small, but she would be out of it with in a few weeks so we figured she would get more use out of the medium. It's a little big, but she can use it and will be able to grow into over time. You can choose blue, red, teal or purple (no pink). We picked the purple one.

Casey really enjoyed the cranial session we had last week. I set it up to be weekly, but this week was canceled due to the therapists having a rash she did not want to rick passing to Casey. We will go back for session 2 next week. Cathleen (Casey's nurse aka best friend) came to sit with her on Thursday so Tim and I could go out for my big 3-0. When we got home Cathleen commented on how Casey seemed much more relaxed. I have no idea how the stuff works, but Casey really does respond well to it.

We are in the process of getting Casey's eye appointment scheduled, and then right after we will start doing weekly vision therapy. Hopefully we will get her in for the initial appointment in the next couple of weeks. Her case worker has been out sick so we have not been able to get much done. Hopefully she will recover over the long weekend and we can really make progress starting Tuesday.

Not this week, but next Casey will have someone come out to look into doing audio therapy as well. This is done through the school district and we don't really know much about this at all. I have no idea if this would also become a weekly therapy, monthly, etc. I don't know if this would be done in our home, a center, who knows. Casey has a follow up hearing test, but they are way backed up so we won't be going in for the test until August. I am interested to see what happens with the audio therapist coming out, but I really have no expectations since I have no idea what is even involved.

That's about it for now. Casey is resting from a busy morning of parting. Her and Tim have a big UFC fight coming on in a few hours so she has to get her rest in now. We hope everyone is doing well. We'll post more later.

Updates

Casey and I seem to be getting busier and busier. We seem to keep adding more and more therapies, specialist, treatments, etc. Every time I think we have everything set up something new gets added to the routine. Everything is going really well, just very busy.

We are still making progress (slow, but steady) on Casey's feeding. We used to barely clear 500cc per day and now on average we are 550-600. It is a pretty huge step for us, and we will continue to move forward as much as we can. We still have some reflux issues (some days are worse than others) but overall it is getting much better. I have heard many people say kids out grow reflux. I don't think we are there just yet, but it is a nice thought to have.

We had Casey's 1 year pediatric appointment and she is finally done with the RSV shots. She also had a Chicken Pox vac. on the 1 year visit. No more scheduled shots until 18 months. Her length is great, her weight and head are still to small to chart for her age. They are growing though, and she looks healthy.

Our current PT is coming twice a week in place of Casey's normal PT. Casey's normal PT is on maternity leave until September. Our current PT is actually pregnant now and planning to go on leave starting in September so that worked out pretty perfectly. We had Botox injected in Casey's legs mid-April and have not seen much from that. Her left leg loosened up a little, but not enough to really bend the knee. Her right leg is still stiff as can be. We have noticed that heat helps relax both legs a little as well, but still nothing has been able to get a bend on either leg. I am not sure as of now if we will try a second round of Botox, or if we will have to start looking into other options. We go back to Ortho in July. During this visit we will decide what we want to do with her legs, and hopefully we can get her foot surgery scheduled. We still think her feet will make a huge difference in her overall comfort. I think once she can roll over without having her feet stop her she will just be so happy.

We missed our Neuro appointment in March to review the latest MRI results (Casey ended up in the hospital). We have been trying to get back in sooner, but as of right now it looks like we will have to wait until May 31st to get in for that update. I am sure if there was anything urgent they would have told us on the phone, so hopefully what they found will be good news. We will just have to wait and see.

We finally got in to see pulmonology recently. This ended up being a lot more than I expected. They did some xrays and saw Casey has very inflamed respiratory system, and chronic lung disease. In order to try and reduce some of the swelling they sent us home with a concentrator, oxygen and a nebulizer. We use the nebulizer twice a day to give Casey breathing treatments. Then we use the concentrator and/or the oxygen tanks as needed to help Casey get more oxygen into her system. We also were sent home with a pulse ox. This machine monitors Casey's heart rate and her oxygen level. This is handy to have to know when or if we need to use the oxygen and/or concentrator. They also sent us home with a machine call a cough assist. This applies positive and negative pressure, then pauses in cycles. This basically mimics the bodies way of coughing to force some of the secretions to come up a little easier for Casey. At first we didn't see much with this, but she is coughing when we do it now. She doesn't cough up much, but I guess anything is good. We go back in June to do a sleep study. During this study they hope to get a better idea of her apnea and her oxygen levels. Then we go back again later in June to get the results of the sleep study (as well as some sort of apnea treatment I am sure) as well as updated xrays. They are hoping the treatments we are doing now will show a good improvement on her inflammation for the follow up xrays.

We are still waiting to hear back from genetics to see if they want to look any further into possible genetic contributors to Casey's condition. We are very doubtful that they will, but one never knows.

We had our 1 year check up with the regional center as well. The regional center is the group that provides our respit, OT & PT. They are keeping all of her existing services in tact. They have ordered a Feeder Seat that should be here in the next couple of weeks. Once it is here we will move OT from twice monthly to a weekly session. In addition they want to start vision therapy.

I called one eye doctor after another and none seemed to work with kids Casey's age, or if they did, they don't work with her severity. It was very stressful. One of the ladies that runs the UCP (United Cerebral Palsy) suggested I talk with Dr. Bill that is just around the corner. His group The Center for the Partially Sighted seems to be a great resource. They will work with the regional center to first examine Casey and determine what level of sight she has. Then they will help us set up the proper therapies to help stimulate her sight, get her blinking, etc. Dr. Bill comes very highly recommended and after talking with him I see why. I am looking forward to seeing what all they can find out. I don't have a date for these tests just yet, but hopefully early next week I will be able to get something scheduled (hopefully the appointment will be in the next few weeks as well). He did mention that they will most likely fit Casey for glasses. They may be corrective depending on her results, but at a minimum he would have her fitted to protect her eyes since she doesn't blink at all. How cute will that be?!

I have an appointment next week to start Casey on a weekly Cranial Sacral session. Acupuncture has also been suggested. The place we are taking Casey for Cranial Sacral does both, and they may combine the 2 into one session.

In addition to all that we have going on with Casey, Tim has been pretty busy too. His back has hurt him for years, and he could not seem to get answers anywhere. He finally went to an ortho that ran some tests (including an MRI and nerve test). It turns out that Tim has a herniated disk. He is in a lot of pain right now and working with the ortho to try and figure out the best way to get it repaired and get him back to his previous active lifestyle. It is really hard on him not to be able to run and workout. I hope they get this fixed and get him out of pain soon.

Casey and I are very busy these days. Things are moving forward though, so busy is a good thing. As we find out more about her vision and see how she does with the cranial sacral/acupuncture I will try and post updates. I hope everyone is doing well!

1st Birthday Party

I can't believe it but our little angel is 1 year old. What a year!!! She is doing really great.

Her botox injections were last week. They said it could be a week or two before we see a difference. So far there is not any major changes. Her left legs seems like it may be loosening up some, but she is not bending just yet.

She has her 1 year appointment on Monday and we see pulmonary on Wednesday. Her genetic appointment went pretty well last week. The doctor was very good and familiar with kids like her. It will be a little while for them to review everything before we know if they feel any of her condition is genetic or if it is all from the brain injury. We are pretty sure it's all due to injury, but we have to rule everything out.

Casey's grandmas both came in to celebrate the big day. On Saturday we had her grandmas as well as some friends come over for a little party. Casey seemed to really have a good time. She was very interested in the other babies and showed a lot more interaction than we have seen her do. She was so tired by the end of the day.

Casey loves elephants and stories. She got a bunch of both for gifts as well as a bunch of other great stuff. We really wanted to get her an elephant shaped cake. We shopped around for a while and had pretty much given up and settled for an elephant decorated square cake. In the last week a friend of ours told us about a bakery out near Long Beach (Rossmoor). We called and were able to get them to do exactly what we wanted. The cake turned out great. In addition to the cake they decorated the board it was on to be a jungle theme to go with the elephant. It was sooo cute. We will definitely use them again in the future.


We got up and went to the hotel the next morning to have breakfast with the grandmas before my mom "Cappy" had to head back. Casey slept through most of breakfast, but she did wake up enough to spend a little extra time with Cappy. After the hotel we came back to our house along with Tim's mom "Grandma Barnes". The excitement of the weekend really caught up with her by the end of the day Sunday.

Thanks to everyone for helping Casey celebrate her big day, she had a great time.

Updates

Casey is so happy to be home. With in an hour of having her home she was cooing and talking to her couch. She has been doing so much better since we got back home. We have the oxygen at home to use at night, but we really don't see it doing much. The flow is only 5, where the flow in the hospital was 12. So you barely feel it coming out at all, and to be honest we weren't sure it was really needed to start with. We started out using it every night, but have backed off since. We use it for a few hours if she is having a hard time, but for the most part it is just there in case we need it. We use it to give her Albuteral treatments as well, when needed. I think we have done maybe 3 since bringing her home. In addition she gets a daily dose of Caffeine Citrate every morning. We don't see this doing much either. We do give it to her, but don't see anything from it. We have an appointment with pulmonary on May 2nd. Hopefully they can see that she has improved and possibly won't need to continue caffeine nor the oxygen. We will just have to wait and see.

We did not come home with an apnea monitor. I would guess Casey still has some apnea spells. We saw as she was getting better in the hospital that the spells seemed less and less frequent. I would guess they are pretty seldom now that she is feeling so much better. The Caffeine is supposed to help with apnea, and maybe it is, but its really hard for us to tell.

Other that continuing to regain strength Casey has a lot of work to do to get some weight back on. She lost about 1.5 pounds while admitted. They sent her home just barely over 14 pounds and she has been gaining a little every day. She is not quite back to 15 just yet. She has her next GI appointment on April 25th. Hopefully she is at least back to 15 by then.

We have a pretty busy schedule over the next few weeks. She finally is going to make it to the genetics appointment that we were headed to the afternoon she was admitted. She also has a follow up ENT to check on her ear tubes. These are both on Monday. Then Wednesday she will have her first Botox injection (FINALLY!!!). The following week she has her 1 year pediatric appoint, GI, and possibly a neuro follow up. And, most important, she has her birthday party coming up on the 21st.

Both grandmas are coming in for the party. Some of her NICU baby friends will be here. Some of our friends will be coming as well as some of her friends and care providers. It should be a really nice little party. I hope she has a good time. She loves elephants so we are doing a pink elephant birthday cake.

That's pretty much it for right now. We will post pictures from the party and her visits with the grandmas soon. We hope everyone is doing well.

Casey finally home

After a lot of discussions, we have the doctors agreeing with us that Casey is better off continuing her recovery out of the hospital, so we brought her home today. She is so much happier with all the noise and people bothering her and wires all over the place. She is already moving around a lot more and is more vocal than she was in the hospital room.

They have sent us home with oxygen and a couple of new medications, and we are hopeful that she will not need them for too long. We also have a followup with a pulmonary specialist soon to look further into her apnea, although it has decreased a lot in the last couple days.

Out of ICU

Good news - we have finally been moved out of ICU and into a normal room. It looks like if all goes well we will be going home next week. Casey is still having problems with apnea, but the pneumonia seems to be almost gone, and she is much more comfortable since a few of her lines have been removed.

Off the ventilator, seizures, apnea

Well, finally yesterday they decided to try Casey off the ventilator, since she had a couple days of lab work and chest xrays getting better. Since they took out her tube, she has been having a lot of trouble keeping a consistent saturation of oxygen in her blood - nothing extremely low, but below the comfort zone for the ICU doctors.

After a lot of different tests and therapies and positions tried, a nurse noticed a pattern in Casey's breathing linked to her desaturation. After changing some settings, we saw that every 4 minutes Casey would stop breathing for 11 seconds. Since she normally takes very shallow breathes, this is very hard to to see, but it is definitely apnea. After she starts breathing again, her oxygen saturation jumps back up to almost 100% and the cycle starts over.

Now their attention has turned to why this is happening. There are different theories, such as Casey having difficulty clearing some of the narcotics given to her, which are common to sedate babies on ventilators. Another possibilty is that seizures are triggering the apnea, since the brain stem does control breathing and Casey's damage at birth covers pretty much her whole brain. Or, the apnea could be caused by something else.

The doctors will be continuing to do tests to figure this out. We have to be at the hospital for at least another week while Casey finishes her antibiotics, starts her feeding by tube instead of the current IV, and just generally get stronger.

Thanks for everyone's support - we will keep you posted on what we find out!

Back in UCLA ICU

As many of you know, Casey was taken to the UCLA Medical Center on Monday after having difficulty breathing. They admitted and gave her oxygen while they waited for xrays and test results, which showed that she had an infection in her chest. Pneumonia has always been the biggest risk for children with severe HIE and reflux like Casey, so we were very concerned.

Over the last few days, her health got rapidly worse, and she is now on a ventilator with what is called Acute Respiratory Distress Syndrome. This is very serious, and the antibiotics and other drugs need to help clear her infection soon, although right now they have to use more generalized antibiotics due to none of the bacterial-type tests coming back positive.

We are staying with Casey all day and night, taking turns coming home for naps, which isn't too far away. She is heavily sedated as they are trying to keep her as comfortable as possible with all the procedures they are having to do. She has always been a tough little girl, and this is no exception. It always amazes us how strong she is with every visit to the doctors.

I have taken off work this week and will most likely need to put in for an extended leave or modified schedule, as it is unlikely that she will be discharged in the next 1-2 weeks. We won't be on email too much, so leaving a message on one of our cell phones will be the best way for us to get back to you.

Please keep Casey in your thoughts and prayers, and we will update as often as possible here.

Busy Week

We have quite the busy week this week. Tim bought a new Nissan Quest (minivan) to help with transporting Casey. We have been trying to take her for rides to get her used to it. So far she seems much happier in it than she ever was in the Xterra. I was sad to see the Xterra go. That was the longest I ever had a car. Last week, not even a week after we bought the new car, vandals broke into the garage and really did a number on all the cars (15-20 total). They slashed pretty much all of the tires (included all 4 of ours). They keyed may cars, they sprayed the cars with the fire extinguisher, and they pounded on some cars. Luckily we only had a small scratch and4 flat tires, and the fire spray that washed off. Some cars were really bad. The tires have been replaced. We are glad to have it back, but so disgusted with the entire situation.

Casey's PT went on maternity leave last week so she started up with her temp PT today. Her normal PT will be back in 6 months. The new PT seems like she will be pretty good. She didn't work with Casey yet, she just spent some time getting to know her and her history this morning.
Tomorrow Casey has an MRI in Beverly Hills. They had to sedate her, which means she will have to get an IV. She hates IV's, and I don't blame her. With her tight muscles, and little veins they always have such a hard time starting a line. Hopefully they can do it in less than 3 sticks this time. It just breaks my heart to watch her get poked so much. She had a follow up EEG last week (pictured above), and we will meet with her neuro next week to discuss the results of both.

On Wednesday she sees her pediatrician in the morning to get her RSV shot. Then we head to UCLA for her GI clinic. She is getting so close to 15 pounds. I am sure GI is going to be so excited for her.

On Thursday Tim and I are taking her to Children's where a group of Ortho's will be reviewing her case. We hope to get some good ideas for a progressive plan moving forward.

Then on Friday she has her first working session with her new PT. Some of the things we talked about this morning will be sure that she continues with all the work the previous PT was doing. However, she has some new ideas to try out as well.

We don't have it scheduled yet, but most likely it will also be on Friday, Casey will have an OT visit. We are hoping to get these moved up to weekly rather than bimonthly. Her new PT mentioned trying to get some vision therapy started as well. I didn't even know there was such a thing, but anything that could possibly help sounds good to me. She also suggested acupuncture (which oddly enough just last week Casey's respit nurse also mentioned). There is a technique that one of the specialist Casey sees for orthotics has done called Cranial Sacral Therapy. Casey responded really well to this, so when the new PT brought it up I agreed that it sounds like a good idea. So maybe we can get some of these new therapies started up in the next few weeks. Now that Casey is going to GI once a month instead of week, she has a lot more flex in her schedule.

I will try and post next week after things have calmed down some. Until then, we hope everyone is doing well.

A Few New Details

So it has been a few weeks since Casey had her stem cell injection. They say over the first month or so the changes that we will see will be due to a growth hormone that her body is triggered to produce while the stem cells are getting into her system. Then after 3-6 months we will see the stem cell changes. Anyway, we have not seen a lot yet. Casey has been growing at a pretty consistent rate which may be related. She is gaining about 1/10th of a pound per day on average. She continues to get a little more vocal every day too. She has decided that she prefers to be on her tummy lately. It's kind of hard for her though. With her feet being flexed all the time and her legs being rotated out the feet work like anchors when she tries to roll. We prop her up on pillows and let her feet hang over the end so she is able to practice her rolling (she loves it!!!!) but she is not able to get past her feet with out having us hang them over something. She still loves to smoosh her face too. If she is being held she wants to smoosh into the holder, on the couch she smooshes the cushion, etc. When she rolls on the pillows she starts with her head to the side, but then quickly lifts her head and turns face down then buries her face in the pillow. We are working on getting her to keep her face out, and to lift her arms during the roll practice. She is getting there, it's very cute.

We had an appointment on the 8th with our third neuro. Even though the first two were highly recommended and experienced in Casey's diagnosis, the first one had HORRIBLE bed side manor and was just so unpleasant. The second one was not as bad, but she was a too old-school for us and wasn't comfortable with more progressive treatments. The new one we were sent to by our second ortho. The new doctor is giving us a bit more hope. Rather than throwing his hands in the air and saying there is nothing he can do, he sent her for tests. He has been talking to us about a few different things he wants to explore, but ultimately he wants to first find out what's going on, then find a way to improve her stiffness. FINALLY!!!!!!

Casey raises her arms a lot and tries to roll over. This is a very common movement for her, and we never thought twice about it. The new neuro was concerned that the action could be related to a minor seizures. He at first wanted us to have Casey admitted for tests and immediate treatments. We talked him out of that and agreed to take her back the next day for an EEG. EEG's are used to detect any seizure activity in the brain - Casey has had multiple EEGs since she was born, and they have always come back negative for seizures, even the EEG done right after she was born.

On Friday afternoon (just hours after the test) I spoke with the doctor. He had not looked himself yet at the EEG, but was told by the tech as well as his resident that they did not see any obvious seizure activity. He said they would be doing a more comprehensive review of the tests over the weekend, but at first glance we do not need to worry. On Monday he called back to say that they did see some activity that could be seizures. My first thought was, 'How long has this been happening? and have they caused any damage?' There is no way to tell, especially since small seizures that show up on an EEG with children like Casey don't always show themself with a physical movement.

We started Casey on a seizure med that same day. So far we have not seen any difference. The doctor has called us at home a few times in the evening to check in on her, and we are still adjusting the dosage. He is hopeful that once we get the dosage correct that it will not only help the seizures, but will also help her tone. It would be great if this could help loosen her up some. He is sending us for an MRI (not yet scheduled) to give a more specific diagnosis on affected areas. We haven't had an MRI for about 6 months so it will be good to check changes since then, especially since we have done hyperbaric and stem cells.

Then in March (1 month later) he wants a follow up EEG to follow the possible seizure activity. We are so relieved to finally have a neuro that is actually trying to help. Once he is sure the seizures are under control he is going to start focusing on other areas. He is much more proactive, and seems to really care about his patients.

We had our second appointment with our new ortho on Valentine's Day. He is working with the neuro to try and best determine how to approach care for Casey's stiffness. He is focusing on getting her loosened up and comfortable (which is all we have been asking for). We are going back to his clinic on March 8th. There is a gathering of specialists from around the world that happen to be meeting that day at Children's LA; he suggested bring Casey in to get the benefit of having that many eyes/minds/etc thinking up ways to help her. We are excited about the appointment.

We are focusing on the feet (anchors) first. If we can get them fixed so she can roll on her own she will be so happy. We are looking at possibly doing botox in mid April (depending on what we hear on the 8th). Then depending on the out come of the 8th we will either see what if any affect the botox has on her feet, or we will look into getting her into surgery. Either way, we should be moving forward in the VERY near future.

We are so much more happy now that we have better neuro and ortho. It makes such a huge difference. We are very optimistic on finally making some real progress. With her new doctors, and the stem cells kicking in soon, we hope to have some very exciting posts coming.

Tim gave Casey her first pair of shoes for Valentine's, they are the cutest little pink Nike's. Tim and I went to eat in Malibu so Casey got to spend the evening with her best friend (Cathleen). They traded Valentine's gifts, it was very cute.

Back in U.S.

We are back in our hotel room in San Diego and relaxing after a long day - here's a play by play of our trip to Mexico:

Someone from the US research institute picked us up around noon at the hotel. He had a nice minivan so transferring the car seat was very quick and easy. We got Casey loaded up and headed for the border, which was only 15 miles away. The trip went quick, and just like last night Casey did great in the car ride, very uncharacteristic for her in a car, but we loved it.

He had the stem cells with him in a little medical cooler, keeping them at -85 degrees until we were ready to inject them. We talked a bit more about the technical details of the cells, and learned that the FDA lab in South Carolina where the cells were cultured recently improved their process and we would be the first to get 2 million cells in one vial (1 milliliter) whereas in the past it has been 1.5 million - we were very excited to hear this.

After getting to the clinic, the doctors and nurses there confirmed that she was too small for an IV, so we went ahead with prepping for an injection into the skin at her waist as expected. The doctors took the vial out of the cooler and even let us hold them for a while to help raise the temperature. Dr Ramirez did the actual injection and it took less than a minute and Casey moved around a little but nothing more than a normal vaccination shot.

As soon as the stem cells are injected, growth hormones may cause some changes, but anything we see in the next couple weeks will be secondary to the stem cells. The cells themselves can take months to graft to the injury site, differentiate into the type of cell needed (i.e neural), and begin functioning.

We stayed at the clinic for about 90 minutes to be sure there were no allergic reactions, and then headed back. The line to get back to United States was longer and lined with t-shirt, blanket, etc vendors. Border patrol didn't bother too much with us, so we got back to the hotel pretty quick.

Now we are just hanging out in the hotel room and relaxing, and will probably head back to Santa Monica in the morning. Casey seems exhausted from the trip so far and is being an angel hanging out on the king sized bed watching TV with us. We also brought her couch cushion that she loves to snuggle on, so that is helping.

Thanks for everyone's thoughts and prayers - after a lot of preparation, Casey finally has her first stem cell injection. We will make sure to keep everyone posted as we see changes!

SC Day

We made it! The trip went much better than we had expected. 405 in LA county is really rough, so she started out pretty upset. I sat with her in the backseat (as usual) and I was able to stay on top of suctioning and keep her calm. By the time we got to the OC the road was a bit smoother and she started to calm down a bit. It was a hard trip for her, but she was able to make the whole thing without having to stop at all. We made it in just over 2 hours. She was VERY happy to be out of her car seat once we got to the room. She was such a good girl the whole way here. I know it was hard on her, but she did great. She went right to sleep when we got her situated in bed. She normally wakes up once or twice at home and her wake up times were pretty normal last night. Her second wake up she was really upset. I think she was confused, she knew it was not her normal bed. It took a little while to get her to relax, but she finally did and went back to sleep for a while.

There is a Coffee Bean nearby so Tim is happy. We are just finishing up our coffee now and waiting on our ride to come pick us up. They are picking us up in a Toyota van. It should be a good test to see how much difference the car makes on Casey's reflux.

We should have lots of good pics, video, etc after today. We will try and get it posted as soon as we can.

Stem Cells - Part I

Well, we are just about loaded up and ready to hit the road. We should be well on our way by 8:PM tonight. We are heading to San Diego for the night, then at 11 tomorrow morning we will be picked up at the hotel and head over the border. We are tentative for a noon injection, but they don't really stick to close time lines so it may be a while to wait. After we are done we will be brought back to the hotel where we will hang out and then get back to Santa Monica Friday after the morning rush hour ends.

This is Casey's furthest distance trip as well as first over night. It is a really big deal to all of us and I am sure it will not be easy, but it should be well worth it. We stopped her food a little while ago so that she should have an easier time with reflux in the car. We also medicated her so that she will be a little more relaxed. The trip online looks to be about 2 hours. If we make it in 3 I think we would have done pretty good. Then tomorrow morning they say it is less than an hour from the hotel to the clinic.

We have packed all of Casey's favorite toys so hopefully she will be happy to hang out at the hotel. We will post details and pictures as soon as we can after returning home. I am sure it will take at least a few days to get Casey back on her schedule so don't be alarms if we don't post until later in the week.

Christmas and more

Oh wow, it has been nearly a month since our last post. Let's see, where did we leave off? Tim mentioned that we are looking into stem cell injections for Casey. We are finalizing all of those details now. It looks like we will head to San Diego after Tim gets off work and traffic dies down on Jan 31. Then on Feb 1 (most likely afternoon) we will be picked up at the hotel and taken over the border. We will get her injections and then they will take us back to the hotel. We decided we will stay one more night in San Diego and head back to Santa Monica on Friday. At first we had considered doing it all in one day, but with how much Casey hates cars, and shots, we decided it would be MUCH easier on her if we go down early and give her some time to calm down after the drive before the shots, then again after the shots before having to do a long drive again. It's going to be a really hard trip for her (well all of us really), but we are looking forward to it.

HBOT went really well. I was scared at first being that I could not take in the suction machine (only a bulb). With the medications we gave her to basically sedate her during the sessions, and clearing her out really good before starting up, out of the 40 sessions we only had to have them rapid decomp twice to get us out. Once was early on and we got her calm and went back in and the other was just 10 minutes before the session would have ended. So really, she did fantastic. We will most likely do another session of 40 later in 2007. So for at least a little while I can wear jewelry again :)

Casey had a wonderful Christmas and New Year. She really likes all of the great stuff she got. Lots of clothes, books and toys. We have been doing lots of reading and she loves it. Thanks again to everyone for all of the warm wishes and thoughtful gifts.

Casey is just over 13 pounds now. She had a while that she just didn't gain at all. Over the past few weeks she has put on a small bit, and she is doing pretty good on feeds. She has some days that are better than others, but all in all she is making progress. Slow progress, but progress none the less.

We will post more as we get more details about the stem cell trip. We hope everyone is doing well.

HBO ending, Stem cells beginning

Well, there is less than 1 week remaining in Casey's 40 hyperbaric oxygen sessions. We have seen a few little changes over the past couple months. She is now able to take the occasional bolus feeding (sometimes up to 80cc at once), crinkles the corners of her month at times, and even managed to flip herself all the way over onto her stomach one night last week. We're not sure how she did this, as no matter how much she arches her back, her leg stiffness usually keeps her from rolling very far, but she found a way when we weren't looking.

More than anything else, her crying has gotten much louder since HBO started - hey, this wasn't in the brochure! :-)

As many of you know, we have been researching stem cell injections for Casey for a number of months. When most people hear stem cells, they immediately think embryonic, but significant progress has made treating patients with stem cells derived from umbilical cord blood, which is what we plan to do. Casey will either receive a shot or get the cells IV, both of which have specific benefits. A more invasive (and more effective) approach of inserting a needle directly into the brain is not quite mature enough for us to consider for her.

China and Mexico are the leaders in this type of treatment, and due to the logistics of traveling with Casey, we have decided to go to Mexico. Even though this treatment is not available in the US, the doctors there work closely with a research institute near Los Angeles to track progress, and the stem cells themselves even come from FDA approved labs right here in the US. It seems ridiculous that the US will create and sell the stem cells, and also allow US doctors to participate in the management of care, but make the actual injection for neurological treatment illegal (stem cell treatment is approved in the US for many other conditions, such as leukemia). In any case, we have to accept this is the current state of affairs and work with it.

We are targeting the end of January for the first injection, as we want to get through the holidays and then also have orthopedic and GI procedures pending in the next month. We will post an update when we have more info on any of these.

We want to wish everyone Happy Holidays and thanks for all your support this year!

Love,
Casey, Tim and Marty

Thanksgiving

Casey had a nice visit with her Cappy. My mom came in for Thanksgiving and stayed for a few days to spend some time with Casey. On Wednesday before the holiday Casey had her 7 month shots (with the second half of her flu shot). She had never had a bad reaction to the shots, but on Thursday she was so sick. She had a high fever, she wouldn't stop crying. No matter what we did, what we gave her, nothing seemed to help. We were about to take her into the ER when she finally fell asleep around 6 that evening. We felt bad. My mom had fixed a wonderful meal, and she wanted to splay with Casey, but instead of us all enjoying dinner and the baby Tim and I ate in shifts while the other laid in bed with Casey trying to calm her down. Luckily she was doing better on Friday so my mom was able to hold her and stuff.

Casey had an ortho appointment on Tuesday this week. Tim and I wanted to talk with the head guy about how frustrated we are with the current plan for Casey's legs. They keep getting worse, and it seemed as if no one was willing to do anything. After pleading our case, and preparing for battle, we were happily surprised that we did not have to battle at all. The doctor heard us out, answered all our questions, and then was very cooperative in coming up with a new, more aggressive approach. Unfortunately with the holiday's going on, we are not able to get her back in to start on the new plan until the end of January. But we feel much better knowing that someone is finally going to do something. The doctor said that her case does not fit the standard for Botox, but that he thinks we should try it. He is going to have his Botox person reevaluate Casey, and if she still won't do it, he said he would do it himself. We will give the Botox a little time to see if it helps (hopefully it will). But if it does not he has other more invasive (surgical) options that we can pursue if we need to. Hopefully the Botox will do the trick.

HBOT was closed for the Holiday and then Casey had doctor's appointments, so she ended up being out for a full week. She and I started back up on Wednesday. She is still doing really well. We drug her before hand to keep her calm, so we get in the chamber and she goes right to sleep. She has been getting louder and louder lately, and she has been a little more fussy than normal. We think her body may be going through some positive changes (possibly due to HBOT) and the changes are scaring and confusing her. She is starting to move her mouth a little and her chin. I am wishing for her to smile for my Christmas gift this year.

We have our normal GI next week, and HBOT of course, but other than that we have a pretty slow December. I am looking forward to a nice slow month. October and November have been a bit crazy around here. I hope everyone is doing well.

Half Way

We complete our 20th HBO session at 2:30 today. They told us that around 20 is when we should expect to start seeing changes. We have been able to increase Casey's food, and she has become much more vocal in the past few weeks. It's possible those are due to HBO. We have noticed in the past few days that she is more responsive to oral stimulation. We will post more as we notice any additional changes over the rest of her sessions.

We had a GI appointment on Wednesday. Casey has finally started gaining weight again and is at 13 pounds now. We changed her meds again. They added Milk of Magnesia once a day to try and help with the chronic constipation. So far so good. Hopefully this will continue to work for her. She is so much happier when she is not backed up.

Tim and I had a respit date last night. We grabbed a quick bite and a show. Both were good. When we returned home Cathleen told us that Casey had a poopy diaper and then crashed. She stayed asleep for most of the night. She gets so worn out after a good BM.

Theresa (Tim's mom aka Grandma Barnes) was in town last weekend. She and Casey had lots of cuddle time. Casey loves to cuddle. Casey was a bit fussy on one of the days she was here. Casey is just now getting over her cold, and didn't sleep much the day before, so on Saturday she was a bit cranky. Other than that she had a really good weekend. She nuzzled up to Grandma right away.

My mom (aka Cappy) will be here for Thanksgiving. She has not been here since Casey came home from the hospital. I think she is really looking forward to having Casey at home so she can hold her and cuddle as much as she wants.

For any family members on the Stockton-Creel side, Megan and Molly drew names for Christmas. Megan will be sending out an email with the list so everyone knows who they have. Also, anyone with little ones, be sure to reply all to her list with sizes, interests, etc for the kidos. I can't believe Christmas is already around the corner. It really snuck up on me this year. They have Santa come by the clinic so I will be sure to get a picture of Casey with Santa as soon as he gets there.

I hope everyone is doing well. Have a great Thanksgiving, and eat lots of pumpkin pie :)

HBO is Going Well

It's been fairly quiet on the home front. We had a crazy few weeks, but we are settling into our new routine now. Casey is doing good with HBO. At first she would wake up a lot and shift around. Now that she is used to it she sleeps thru the entire session. She normally curls up on my arm and goes to sleep as soon as they start the pressure and then she wakes up as the pressure is released. It is a little hard on Tim. Instead of having the car every morning he is having to go in late or early so I can have it to get to and from the sessions. We go from 8-9 every day so if he works from home while Casey and I are at the session then he heads in as soon as we get home he can normally make it in a little after 9. On days he has to be there before Casey and I drop him off early, so we are making it work.

Casey's PT is going well. Her new PT is doing great, we are so happy we changed. Casey is keeping her hands open a lot more, and her over all tone seems to be loosening up. Of course her legs are still stiff, but I think they are slowly getting a little better. Between PT and HBO we are hoping to see them loosen up more and more each week.

When Casey is in the HBO chamber, getting PT, riding in the car or bathing we have ti turn off her feeds. Being that she was already on the lowest end of healthy/safe calories I was a little concerned when we started HBO since that adds 5-6 hours a week. I talked with her GI doctor about increasing the calories by supplementing the formula, but I was still worried. On one of the groups Tim chats with online someone suggested we try doing bolus by gravity. I really thaught it was a dumb idea and I was sure it would not work. I agreed to try it, but was sure that she would not take much and it would be a waste of time. A few times after getting home from HBO during our first and second week I would give Casey about 30cc by gravity. To my surprise she would tak the full amount in minutes. Being that she was only on 22cc per hour on the 24x7 feed 30 in less than 20 minutes was a huge deal. Tim and I decided to test out the gravity theory this weekend. On Sunday I stopped her for about an hour to let her empty out the food she had in there. Then I hooked her up and gave her 20cc at a time up to a full 100cc in about 20 minutes. She didn't reflux at all. I was so excited. At about 45-50cc she totally filled her diaper (a stinky one too). So shortly after finishing the 100 I moved her to chnage her diaper. Moving her and crunching up her tummy caused her to have some reflux, but nothing major. After we got her chnaged I put her back down to rest some and she did great. I waited a few hours then tried to do another bolus. She could not handle the second bolus at all. I felt horrible, after 10-15 sh estarted shooting food out her nose and cried like crazy. She filled a second diaper too. We got her calmed down and put her back on the 24x7. Now we are turning her off around 7 in the morning then at 9-9:30 (when we get back from HBO) I am giving her 75-80cc. Then between 10:30-11 I am putting her back on the pump at 24cc an hour. She is doing really good with this. I am hoping to keep her at 75-80 for this week, then next week go up to 85-90 then add on more each week. Hopefully by the end of her 8 weeks we will not only be over 100cc but I will be able to give her 2 or 3 of these during the course of a day. I am so excited that she is able to do these. This is such a HUGE step forward for her. I am not sure if it is a benefit from the HBO, if it is just her growing, or what, but what ever it is I am so happy.
My research project ended last week. I went in for the final portion (an MRI) on Thursday. I had never had one before. I knew they were loud, but it was not at all what I expected, I expected loud clanking noises, but it was more like an alarm was going off somewhere. It actually reminded me of bad zombie movies where there is always an alarm going off in the background. I just laid there and counted the beeps and time flew by. The first round was only 30 seconds, that one was nothing, then the secons was 8 minutes. I counted 253 beeps then they pulled me out. No one asked me to follow up with nuero or anything, so I guess I am tumor free.

For anyone that has not been to our apartment, it does not have a security door/lobby like many LA apartments. It is open to the street instead like a traditional town house. We have always had kids come by with school fundraisers looking for donations and stuff (that's fine). We have had a few adults show up with less than creditable sounding organizations they want money for. When Tim is here with me I never thaught twice about these visitors. However now that I have Casey I am much more caution and aware of this type of thing. Some seeding looking guy came by today right after Casey's PT left. I assumed it was the PT forgetting soemthing so I opened the doorand was very surprised to see this guy there. He was one of those that kept looking around me checking out the apartment and stuff. I wsa very uncomfortable with this so as soon as I closed (and locked) the door I called Tim at work and told him abut it and suggested that we get a peep hole for the door. I always knew I had a great husband and that Casey has a great dad, but now I am even more sure of this. I expected that maybe he would stop on his way home from work, or more likely go out this weekend to get a peep hole. However just an hour later I was sitting on the couch with Casey when Tim came in. He was worried about us and actually took time out to go get the peep hole shotly after we talked. He came in, put it in place then rushed back to work. I am so lucky to have such a caring, protective husband. Sometimes I really don't know how I got so lucky.

0.5 years old

Casey's first week of hyperbaric oxygen treatment went pretty smooth. Marty and Casey are going every morning from 8-9am Monday-Friday for 7 more weeks. The doctor's say that most people who see improvements don't see anything for the first couple weeks. So far we haven't seen any changes, but Casey is tolerating the treatments well and we are hopefuly we will see something in the next couple weeks.

I got to go to one of the hyperbaric sessions this week and took some video of Marty and Casey in the chamber - you can have a look in our video gallery here.

Casey also went for her SPECT scan on Monday (which was also her 6 month birthday!). The doctors were running way behind so by the time she was done she was very hungry. Marty did a "gravity" feed without the pump and Casey took 30cc in just a few minutes, which normally she can't take in a full hour. They also had a hard time with the IV and had to stick Casey's hands and feet a lot - they finally wound up putting a line in her neck, which looked much worse than it probably was. By the time everyone got home, Casey was exhausted.

Another round of shots at the pediatrician this week, and mom even got stuck with a flu shot. Because of a shortage, most adults can't get flu shots around here, but because Casey is high risk, our pediatrician agreed to give us shots. Casey also got measured again and is now 12 lbs, 5 oz and 26 inches.

Hearing followup, SPECT scans

Casey's ear tubes were successfully placed this morning. She was able to get the same anestesiologist as she had for her last procedure. Dr. Ayad is so good with her and we just feel so much better knowing he is the one watching for suctioning and such. The ear doctor told us that she removed a lot of fluid from both ears and that they were both inflamed, one more than the other. After placing the tubes audiology reran her hearing test. Audiology told us that she still shows mild to moderate hearing loss in both ears. They explain it as though what she hears is a muffled version of what we hear. For the loud area we live in, that may not be such a bad thing. They want to rerun the hearing test again after HBOT. Even if she still shows some loss at that point they may not recommend an aide, we will have to just wait and see. It's possible that she is picking up the sound, but that due to the damage in her brain she is just not able to fully register what she hears.

Casey is going in Monday for what is calling a SPECT scan, or functional brain imaging. It is the latest in showing brain activity as well as blood flow / perfusion. We will mainly be using this to tell us (objectively) the effect hyperbaric, stem cell, or other therapies in the near future are having on her brain function. We will repeat the test after HBOT and can compare the 2 to see the increased level of activity.

We will spend the rest of this week recovering from today's procedure and getting used to the new PT and new PT gear. Then ramp up for another busy week to follow.

Next week we start HBOT, we have the SPECT, Casey has her 6 month birthday and 6 month pediatrician appointment, more shots :( and the usual GI appointment and PT sessions. We also have OT coming by for the initial eval. After OT comes to evaluate we should start to get OT to the house at least once a week. So anyway, another long week for baby next week.

No to botox, yes to hyperbaric

Well, after further examination, the UCLA doctors have said no to botox for Casey's legs. We were very disappointed and will most likely be going for a 3rd opinion, as we still feel it would benefit Casey from talking to other parents/doctors. UCLA's main reasoning is that the large muscles in the leg don't appear to be causing the stiffness - they are distinguising between "spasticity" where the muscles are holding the entire limb stiff, and "rigidity" where the joint is locked due to other reasons. (i.e inflammation, bone problem, neuro...). When we know more we'll post it but unfortunately for now it's no botox.

On the other hand, it looks like hyperbaric treatments will start Monday, October 23rd at five times per week, as long as her ear tubes get placed without any problems (this coming Tuesday). The facility we found in Santa Monica was founded by Ed Nemeth after an amazing story with his own daughter.

Marty will get to be in the chamber with Casey, but we won't be able to take our suction machine into the chamber as electrical components add a fire hazard with the pure oxygen content. We are trying to find a good manual suction pump with no metal parts. If we can't find anything, we'll just use one of those bulb asiprators, but we really should have something better just in case. Decompression takes 7 minutes (anything faster would be unsafe), so in case anything happens, Marty needs to be able to take care of it for at least that long.

Here is a good FAQ on hyperbaric treatments in case you have questions.

Casey's theratog suit came in this week and she went to Footprints to get fitted. She is now wearing it every day to help with her legs and body posture . I have posted a video of the fitting in our video gallery if you want to have a look.

Casey did see her first big Hollywood star this week when we bumped into John Cusack at one of her doctors. He is one of Marty's favorite actors and we haven't seen anyone new in a while (other than Diane Keaton all the time at the pool), so it was pretty cool.

Nice slow week...

Casey and I are trying to take advantage of this week being a slow one as the next few weeks to follow are going to be very busy for us. Casey's new PT started this week. I like the new one a lot. She jumped right in and started working on plans for Casey's legs and arms. I think we are going to get a lot more out of this PT than the last one. The last one did show me some good excercises to do for neck and head support that Casey and I will still work on, but she just wasn't comfortable working with Casey's legs.

Sometime in October an OT from Westside Region is supposed to come out and do an eval and then from that point on we should be getting weekly if not more OT sessions as well. Anyone who is wondering what OT vs PT is I will tell you what I have been told. PT focuses on the larger muscle groups where OT will focus on the smaller ones. So PT will work on Casey's legs, arms, trunk, etc and OT will work on hand, toes, mouth and other smaller muscles. The 2 will cross over some, but we need both very much.

No doctor appointments for Casey this week. She had her GJ removed and a new G placed on Friday and so the next GI will be Wednesday next week.

While she and I were at the clinic last week I saw a posting for a research project they are doing for female caregivers with seriously ill children. I called and qualified so I am participating in a research project now. I have to answer lots of questions, get an MRI and collect urine. Nothing major, but it will pay $225. I told Tim I will become alab rat to earn my keep :)

Next week we have lots going on. Tuesday Casey has an appointment with her ped. She needs to check in and be sure she is in good health before the doctor will sign off for the ear tube procedure the following week. Also on Tuesday we will be going for our initial HBOT appointment. It won't be the sessions, but just meeting the doctor and going over procedure, cost, expectations, etc. Then we have PT and Tim is FINALLY going to get allergy tests started. On Wednesday we have the CP clinic that they say is about 3 hours, followed by an appointment for my research project, then Casey will have GI clinic in the afternoon. As long as we get the go ahead during CP clinic we will go back on Thursday to start Casey on botox injections. Then PT again on Friday. A very busy week for our little pumpkin.

Still no updates on feedings. We are still at 22 an hour, and reflux is still an issue. We have been tryng some new medications that we had hoped were going to help get her bowels moving and process the volume a little faster so she could take more, but so far none of them have seemed to help. The first one just knocked her out and the second one just made her sucretions really bad.

Tim and I have a date on Saturday, respit care is a really good thing. We both hate leaving Casey, but it is really good for us to get out every now and then. We will post something late next week after all of the appointments are over.

Orthotics

Our orthotics appointment went really well. The specialists really worked with Casey a lot and had some great ideas. She is writing up some recommendations, then we just have to get scripts from our pediatrician and then we will be set. One of the main things she wants us to try is called theratogs (http://www.theratogs.com/howitworks.html). Its basically a body wrap that will help mold Casey into better positions. We are also going to be getting some new hand splints and toys that we can use to help stimulate Casey. Overall it was a very good trip. We really like the specialists and she was really good with Casey. In addition to gear she showed us some new positions and exercises to try.

We have an appointment with Casey’s pediatrician next week so we will get the scripts then and hopefully have the gear in the next week or two. Casey really worked hard today and is sleeping like a little angel now.

Yesterday Casey met with her neuro. We have not been real happy with the neuro, and after yesterday we decided we are going to change. We have a recommendation for one that works with kids like Casey. I am going to call and see about getting moved over as soon as possible. We got a new med yesterday. This new med is supposed to help with Casey’s tightness. They said her GI slowness (and frequent constipation) may also be due to tightness. Hopefully this new med will help. We just started it yesterday, so as of now we haven’t seen a noticeable difference.

So much coming up...

We have been quite busy lately setting up appointments and followups for Casey over the past few weeks. Her new tube isn't working out and she seems to be in a lot of general GI or hip pain, although it's so hard to tell sometimes. Just to give you an idea, here is what she has coming up:

Remove her G/J tube and put back the G-tube
The thought here is that the G/J tube isn't working any better than the G-tube by itself, is more uncomfortable for her, and the J piece is more prone to clogging. Also, any time it gets dislodged we can't fix it nor can it be done with in-office visit - we would have to go in for an all day radiology procedure, sedation/intubation, etc. The G-tube will keep her as stable as possible during the many procedures she has coming up, after which we will revisit the question of whether to insert a different length G/J, have surgery for a direct J tube, or possibly other options.

Orthotics
A pediatric orthotics specialist we wanted that was out of the country has returned and we have an appointment tomorrow. She will be videotaping Casey and most likely creating custom items for her ankles, knees, hips, and hands.

New physical therapist
Finally, we have a new physical therapist! The one that was coming to the house did great for Casey's head/neck/trunk/arms, but was not doing much with her legs. Our orthotics specialist recommended a few people and one thankfully had an opening. This will start next week and will still be twice a week.

Pediatrician
Casey has her 5 month appointment next week, where she will get another round of vaccination, which she absolutely hates, but who can blame her. We also have a handicap permit coming to make doctor visits easier, especially when Marty is by herself and has to get Casey and equipment out with the standard narrow parking spaces. An extra perk is that hospital handicap parking is free, which was really adding up. All of Santa Monica/LA parking meters are also free, so no more worrying about that - god knows we have paid our portions of parking tickets :-)

Ear, Nose and Throat
Audiology and ENT have agreed to have tubes put in her ears to help with fluid drainage, since Casey can't swallow, and to get a more accurate hearing test. This will happen in about a month from now and immediately after we will find out about ordering a first set of hearing aids.

UCLA Cerebral Palsy Clinic
Even though they are extremely busy, we were pushed up on the list and will be doing our first CP clinic at UCLA in a few weeks. They will assist in coordinating care between all her doctors, and putting us in touch with doctors that specialize in our situation.

Botox
Ok, this really isn't what you think, although being that we are in LA saying Casey is having Botox treatments does sound odd. Long before Botox was used for cosmetic surgery, it was used for many other medical purposes. Basically, injecting botulinim toxin into a muscle inhibits contractions, to some extent. Since Casey's hip problems and hyperextentions are due to abnormal and severe contractions in her legs, botox will basically allow that area to loosen up. Physical therapy and positioning (for instance in her tub or car seat or carrying her) will also be much easier. The treatment only lasts for 3-6 months and results vary greatly, but it is not invasive compared to other treatments for muscle tightness we may need to consider down the road.

Hyperbaric treatments
After a lot of research, talking to different doctors and other parents, we have decided to pursue hyperbaric oxygen treatments (HBOT) for Casey starting the end of next month. This is one of the few hopeful areas for brain injury patients today. It is considered alternative medicine and not covered by insurance. There are no guarantees on it helping at all, but since traditional medicine today offers no treatments for the repair of brain injury, we are looking into every reasonable possibility. The treatment consists of 30-40 sessions (5-7 times a week, one hour each) in a pressurized, high oxygen chamber. This will increase blood flow and oxygen to damaged parts of Casey's body, and in some patients have resulted in minor overall health improvement.

Well, that's about it - told you there was a lot ;-) We will try to post some new pictures and maybe a video soon. Hope everyone is doing well!

Ear Nose & Throat

Ear Nose & Throat went really well. The doctor confirmed audiologies guess that Casey has fluid in her ears. We have set up an appointment in October to get tubes put into her ears to help drain the fluid. The really good news is that the fluid may account for some, most or even all of the hearing loss that the hearing test showed. The ENT doctor said the report shows minimal loss and that fluid can account for 20-30% of hearing loss. We won’t know for sure for a little while, but it is possible that Casey will not need hearing aids at all, just the tubes. The doctor said they put the tubes in and they stay in for about a year then fall out on their own. It’s routine and Casey has good canals so the doctor said it should be a quick procedure. The bad side is that she will have to be sedated again and we will have to go back to UCLA out-patient surgery. I am going to request the anesthesiologist we had last time. He was great with Casey. Hopefully we will be able to avoid intubation again.

We have our regular GI appointment tomorrow and a few appointments next week. We will post more as we get more details.

Aunt Megan's Visit

Casey's Aunt Megan visited Santa Monica this weekend and got to see her in person for the first time. We got this cute picture of them both in their University of Texas outfits during Casey's first Longhorn game. She is still working on her hook'em horns - it looks like more of a Star Trek sign right now but it's getting there...

Unfortunately, Casey hasn't been able to increase volume with her new tube like we had hoped. Her reflux was really bad this weekend even with increasing a few cc's per hour, so we have backed her off to the rate she was at before Wednesday's procedure. She has her normal Wednesday GI appointment and we will be talking to the doctor's to figure out what is next. This tells us that her stomach is not the limiter, but she is already maxed out on motility meds, so the question is what more can we do about her slow intestines.

Today Casey is at he Ear Nose Throat specialist at the request of her Audiologist. They will figure out to what extent extra fluid in her sinuses (from not being able to swallow) will affect hearing tests and allow us to move forward with the proper hearing aids.

New tube is in

Yesterday at UCLA went very smoothly. Casey had a great anesthesiologist who got her IV in one try, and her G-tube went in so quickly that they didn't even have to put in a breathing tube. We were really relieved at that as whenever they start talking about a breathing tube we know that means going from outpatient to inpatient, but Casey obviously wanted to come home quickly. She recovered enough after the procedure in just a few hours so that we had her home by dinner time, and back on her most favorite spot on our couch.

Now that we have a tube going straight into her small intestine, we will slowly start increasing her feeding rate. If all goes well, we will know that her stomach is what has been limiting her feeding. We'll definitely keep everyone updated on how that goes!

Busy Baby

Casey has been a busy little girl this week.

Today was the first of a few audiology appointment. We did get good news. Casey CAN hear. She doesn't have perfect hearing, and MAY need an aide, but she CAN hear. I was so happy when they confirmed that for me. I always thought she could, but it was nice to be validated. We have to go back at least one more, possibly a few more times before we know if she will need the aide or not. We will keep our readers posted as we find out more.

Casey has gained half a pound. That's pretty good. Her GI clinic and her GI surgeon talked and have decided it would be best to move her to the G/J Tube. This tube will offer a feed into the stomach (like she has now) as well as a way to bypass directly into the intestine. The hope is that by going directly to the intestine that she will not have reflux anymore. Once we are past the reflux we will be able to advance her feeds, and hopefully soon finally get to bolus. I imagine once we start moving her feeds up she is going to grow really fast. The procedure will be on Wednesday. It is an out-patient procedure so she will be home that same day and she will not have to be intubated.

We saw Ortho this week. As for now they are still saying to hold off on correcting the hips. We are going to move forward with botox. The Ortho got us into a clinic that they do every Wednesday morning for CP patients. In this clinic we have access to Ortho, OT, Neuro, and the botox doctors. I will be taking Casey in Wednesday before her GI procedure. OT should be able to get her new splints, and if we like this Neuro we will look at transferring her over. We don't have a problem with her current Neuro, but it makes more sense for us to get them all in one rather than having to bring in an outside party. I am glad we are in this clinic. As Tim pointed out, not only will we have access to the medical resources, but we will also be with other families with CP kids.

We have been battling our supplier (AGAIN) and have finally found a new one. With my insurance being terminated as of today, Casey has been switched to Tim's for everything. So it was a good time to get a new supplier. It was a lot more work than you can imagine, but at least its done. We should have her new equipment next week. Once we get it we will call the current provider and tell them to come get their stuff. We can't wait, that is going to be a great call.

With the CP clinic being Wednesday morning and her GI clinic is Wednesday afternoons her current PT session were set up for Wednesday mornings. That won't work anymore so I talked to the PT today about changing her time and about the objectives of the session. She really doesn't seem to have the same objectives as Tim and I and in addition doesn't have a very flexible schedule outside of Wednesdays. We are looking to change PT now. I really hope we get someone that is as good as the PT she had in the NICU.

Tim is in the process of upgrading the camera. So we sold our camera and will be buying a new one soon. For now I can’t take any pictures of the cutie. I will take some and post as soon as we get the new camera.

4 Months Old

Lots of updates for this post…

First and foremost, Casey is 4 months as of yesterday. And, the cutest 4 month old EVER!!!!

Casey’s PT has finally started up. The program is very short handed, so even though she qualified for 2 sessions a week they can only promise one. The PT then calls when she has openings to fit her in for a second visit. So far we have been pretty lucky, the PT has been able to get in a second visit both weeks, we’ll see if that’s normal or just lucky. She doesn’t do as much as we had hoped with Casey’s legs. We are comparing her the NICU PT that was wonderful so maybe we just had too high expectations. We are going to see how it goes over the next couple of weeks, but we may end up requesting a different PT if she doesn’t do the a little more.

So a week ago Wednesday Casey got a horrible case of diarrhea. The first day I tried not to think much of it, all babies get it. But after 2 and a half days I was really concerned so I called her GI clinic Friday morning. With Casey not getting much volume as is, I was really worried that she could be loosing weight, nutrients, or even become dehydrated. The GI clinic did not get back to me until nearly 5, then they had to page the on call to see what they suggest. The on call called me back fairly quickly and suggested we take Casey to the ER. We ended up at the ER for most of the night. They had to run a line (it took six tries) then they pumped her full of saline. They took blood, pee and stool to run test. The blood and urine tests came back clean so they assumed it was just a virus that we would have to let run its course. They sent us home and told us to just keep an eye on her and follow up with her pediatrician the following morning. The pediatrician had the stool test results and told us that a bacteria had formed from one of the meds Casey was on and that we should get back in touch with GI to see how we should go about fixing the meds. We had to get an antibiotic to kill the bacteria, she started on it Saturday. As of Sunday the diarrhea was finally over. She still has tummy cramps, but the worst is over.

Tuesday Casey had her 4 month appt. She got 2 more shots (one really must have hurt she cried really hard). She had gained a little, but not much. Wednesday Casey had a GI appt. They upped one of her meds since we won’t be putting her back on the one that made her sick. They also discussed changing the G tube to a J tube (it would empty into the bowl instead of the stomach to prevent reflux). They said they can do it without surgery and that we would be able to take her home that same day. We are still researching more info before we will go forward with anything. I am excited about the idea of finally getting rid of the reflux and being able to increase her volume. She is super cute this size, but she needs to grow.

Tuesday night Tim and I had our first respit date. We totally lucked out. We were able to get our favorite NICU nurse to be our respit nurse. She came by for a few hours Tuesday night and Tim and I went to dinner and a movie. It had been our first time out of the house together in months. It was really nice to have a date. We are going to try and get her to come by for a few hours every other week. Casey loves her, and we feel comfortable leaving with her here.

We have talked with neuro this week as well. In order to try and make her a little more comfortable we are starting to move forward with getting her botox for her legs. We really hope that it makes a big difference.

Casey has started to out grow some of her clothes and is starting to get into the 3-6 month stuff now. She has some really cute stuff in this new size. My office had an outfit made for her. All of the geeks that read this will appreciate it. The front reads ‘select * from CUTE’. I really thought it was fitting. She has a bunch of other really cute ones from family and friends.

All in all Casey is doing really good. She is holding her up more and more, and is slowly gaining some weight. Even though she had a sick spell since the last post, she is doing much better now. She is getting more and more vocal every day, and has started to open her hands a lot more and even grab at a few things. The thing she grabs most is her feeding cable (which makes Tim very nervous).

We hope everyone is doing well. We will post more when we have more info on the J tube.

10 pounds / 23 inches

Sorry it's been so long since we have posted - it's been pretty busy here. Casey has finally passed the 10 pound mark and looks so much different every week. She is still usually at 20ml/hour continuous feeding and she isn't gaining nearly as fast as her doctors want, but the surgeon and GI doctors have agreed to not do surgery just yet. With a lot of medicine changes and her stomach growing over time, they are hopeful that a stomach reshaping won't be needed to increase her intake. The surgeon is actually the one arguing that the result of this other procedure would be minimal compared to how hard it would be on Casey, so it was good to see the doctors compromising for what is best for her.

The billirubin protein count the doctors have been checking every week for Casey's liver finally fell below the desired number and they took her off her Ursodiol. It's so nice to have one less medication to deal with, and the way we see it, every milliliter of medicine she doesn't have to take is another ml of food her stomach can handle.

Casey has her regular physical therapies on Wednesday mornings once a week, and we will move to twice a week as soon as we get comfortable with a therapist. We have also talked to our favorite nurse from St. John's where Casey was born, and Kathleen will be coming out every week or two to watch Casey while we take a break together.

Daddy is taking some creative vacation time and is working 3 days a week (Mon-Wed-Fri) in August and September to help out some more at home. By October when he goes back, we should have a lot of the support services, therapies, and doctor's appointments in place and things will be much easier.