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.

3 Months

3 months old today! It seems like just yesterday that we had her and at the same time it seems like we have had her with us forever. I took Casey up to St John’s NICU today to visit with some of her nurses during her first month. There were many great nurses at both hospitals, but there was one in specific that Casey had at St John’s that she really bonded with. Casey recognized her right away and seemed to really enjoy the visit. I think the nurses enjoyed Casey’s visit too.

It has been REALLY hot in Santa Monica lately. With out an AC our apartment has been nearly unbearable. Tim and John went all over West LA yesterday shopping for window units that we would get to work in our unconventional windows. After many hours of searching they finally found one that would work. While Casey and I were visiting her nurses Tim and John installed the unit. It is so much nicer at home now. Casey was very happy to nap with a blanket this afternoon.

Casey has been practicing rolling over, holding her head up, making noises, etc a lot and she is doing great. She really is the most affectionate baby I have ever seen. She loves to cuddle and give hugs and Eskimo kisses. I have to say Casey hugs & kisses have become my favorite things. She is really doing great and continues to develop a little more every day.

Casey’s billi count continues to come down. We expect that this week, maybe next, should be her last on the billi meds. It will be nice to have one less medication to give her.

Casey’s GI and surgeon are talking to try and come up with a long term plan for her continued reflux issue. Her GI mentioned some changes to her medication to see if it would help, I am guessing we will start there. Hopefully we will get it resolved quickly. We have figured out that Casey’s anti vibration is not from secretions, but rather from reflux. If we stop her feeds in time for her to digest most of what is in her belly before putting her in the car or stroller she seems fine. She is only upset in the vibrations when she is feeding and has to fight back reflux. That’s actually a really good discovery. This means that once GI and her surgeon fix the reflux issue we should be able to get Casey out and about a lot easier and therefore more frequently than we do now.

PT is scheduled to come tomorrow morning. Finally!!!! It will be really nice to get her into a schedule with a real PT. Tim and I do what we can, but we only can do what we were shown. I am sure there is so much more out there that she can be doing.

I think that’s about it for now. We are charging the camera now to get some updated pics posted. As soon as we have some we will post them. She is getting so big.

Our Growing Girl...

Our little girl is getting bigger. Casey is 9 pounds 5 ounces now. She hit a period where she just maintained the same weight for weeks, but she is finally gaining again. We actually found some clothes she is starting to outgrow.

It has been a pretty busy few weeks for Casey. Her GI specialists had us start to advance her feeds from 20cc per hour to 25. We started to do this and after passing 24cc Casey started to spit up a bit. If she didn’t actually spit it up, it would get up into her throat and just sound awful. We ended up going back down and staying between 20 and 23 for a few days going down to 20 overnight. The next GI appointment she had (last week) I told them how much trouble she was having once we got up over 24. Even though she is gaining, they want her to be able to take more volume. They ordered a GI for last Friday. Just as we had expected as soon as the barium hit 25cc we saw it come up her throat and then she spit up all over the place. The GI doctor changed up some of her medicine to hopefully help to speed up her digestion a little bit so that we can hopefully get up to 25cc. The medicine change went into place on Friday as well, and we were hoping to see a change right away so we could go back up on volume. However we did hit a bit of a snag. The barium really clogged Casey up so instead of maxing out at 25cc we could barely put her on 20 since she was having such a hard time getting things passed. Poor little baby, she had such a tummy ache this week. Finally today things are starting to get back to normal. Maybe if they continue to progress we can start adding volume again over the weekend.

On Tuesday Casey had a few doctor appointments. The first one was with her surgeon who put in her button. It is really great. We don’t have to tape up a bolster on her belly for the temp tube anymore. The button is much smaller and easy to maintain. It hurt her a little to take out the temp tube so they told me to hold off on feeds for a little while. By mid afternoon she seemed to be doing well, and she was getting really hungry so I started up the feeds and everything went great.

After her button we went to the lab for her to get her bili rechecked. She is such a good girl. They take blood from her arm now instead of her foot (thank goodness) and she cries some, but she does so well. He count is continuing to go down, so hopefully she will able to stop the bili medicine in the next few weeks.

After labs Casey and I headed up to her NICU follow up. Luckily everything is in the same building. The NICU follow up ended up going for multiple hours. She had some OT/PT, some developmental tests, a general physical check, and lots of questions about everything that she has been up to since she came home. In the end the doctors are very pleased with her progress.

Today the regional center finally came by. The regional center is setting us up with home visits with OT/PT. I have been calling them daily since getting Casey home, and they finally came out. Now I have a few more assessment type things that they will be doing, but if all goes as planned we could have OT/PT out at the house as early as the week after next.

In addition to doctor appointments Casey has been getting out more. I take her with me to the drug store on the corner every now and then just to get her out of the house. Tim and I took her down to the beach on the 4th to watch fire works. She was not interested at all, she just wanted to go home and sleep. Last weekend we took her to the promenade to get some shorts for Tim and grab a bite to eat. She was having a really bad tummy ache though, so we ended up getting dinner to go.

Well, that’s about it for now. I hope everyone is doing well.

Latest Update

(check out those lashes...)

It has been a while since our last post, no good excuses, we just haven’t done one. Anyway, what’s been going on in Casey Land…

Casey is getting stronger every day. She has started rolling herself over (not completely but from side to side). She is holding her head up some. She is awake a lot more often than she was before. And she is starting to gain a little weight.

I take her to a GI clinic every week (if I don’t take her in I at least call in the weight from her pediatrician). At the clinic they are working with Casey and I to get her more food. She is still on continuous feeds right now. When we took her home she was on 20cc/hr 24x7. Last week they told me to move her up to 25cc/hr 24x7. I did this over the course of 3 days, but after we passed 23cc Casey started to spit up some. Tim and I put her back to 20cc and I called GI. We decided to be a little less aggressive and take her up 1 cc every 24 hours instead. She is on 22cc now. She gained a few ounces on the new volume. Once she is able to maintain 25cc I am sure she will gain even more. After we get her to the calorie & volume goal we can start working on moving towards bolus feeds (larger amounts then off the feed for hours in between). I am not sure when that will start, we just have to take things slow so Casey can handle them.

Casey had a neuro appointment and the doctor took her off the phenol (seizure medicine). One less medicine to give her every day is nice. She is still a bit yellow so the bilirubin medicine is still being given. Her count is coming down though, so she can get off of this medicine soon.

Casey still loves to hang out on her wedge on the sofa or in our bed. She is just so cute. If you lay next to her she will roll into you to snuggle. Such a sweet baby. She likes Eskimo kisses too. I will give her kisses then when I stop she pushes her nose out for more.

We started having official nap time this week too. Since she is awake so much now we need to be sure she has some structure to her day. I have her napping in her room and she seems to like her crib.

We are about to head out to buy some more wedges. I will try to post more soon.