Saturday, April 21, 2007

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.

Sunday, April 15, 2007

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.