Liliana Sue

I know it has been a long time since I last posted and I thank you all for being so patient! It's tough being a baby though. When I get up in the morning, I have every intention of creating a new post. Then mommy and daddy come in and start playing with me and I completely forget all about it. This time though, I didn't forget and I have lots of great news and pictures for all of you.

I'll start off where we ended last time. All continues to go well with my new gastric feeding tube and medication combination. I take erythromycin three times a day before 3 out of my 5 feedings. I still spit up every now and then, but it isn't every day, or even multiple times a day for that matter. When I do spit up, I just tell myself it's not my fault and blame it on whomever is messing with me when I have a full belly. All the extra nutrition that I am able to keep down is helping me grow and giving me the energy to get stronger. I'm getting so strong that I'm stitting up more and more unsupported. I'm so happy to be sitting up all the time that when someone lays me down, I get fussy.







Because I like to sit up so much, mommy and daddy and the nurses try to keep me up as much as possible. The above pictures are of me and mommy playing while sitting up. Now that I'm sitting up so well, I'm trying to work on my arm strength. It is really hard for me to lift up my arms when I'm not on my back. When there is a toy in front of me though, I just can't resist and reach and play until I can't reach or play anymore. The third picture of me is really silly. Mommy and daddy were laughing at me. My teef have been bothering me lately. I'm trying to sprout a few new ones and I chew and drool on everything. In the pic I'm chewing on the edge of the toy. Mommy and daddy thought I was getting tired and having trouble holding up my head until they inspected further. Every time they would lift my head back up, I would immediately go right back for the edge of the toy with an open mouth. When I got there, I was chewing and sucking like crazy.
Here are a couple more pictures of me sitting up with daddy. I like to sit on daddy's lap and watch television. We usually watch Sesame Street, Barney, or The Goodnight Show. I laugh and smile at Barney.

As a new part of my physical therapy, I've been trying to stand up as well. Mommy and daddy are borrowing a stander from one of my physical therapists.


















As you can see, a stander is something that helps me stand up. It starts out in a lying postition. A strap goes over each one of my knees and my chest/abdomen. I wear my AFO boots to support my ankles. When I am all strapped in, the angle can be adjusted all the way up to 90 degrees. Without it I do not yet have to strength to bear too much weight on my legs. With it, I can stand and even try and bounce a little bit. It is great for improving my strength and maintaining my bones. It even has a table where I can play with my toys, paint, or even read books. When I'm not in my stander, my second favorite place is my high chair which is shown in the third picture. Check out my adorable pig tails! I'm playing with my favorite chew toy...my 5cc syringe.

Well, the Stride & Ride has come and gone. Thank you very much to all who donated. We raised an amazing amount of money. I think we had almost as much as last year but we do not yet know our final total. The MDA is supposed to send us a letter telling us how much we raised. We did not make the top team this year. The top team raised over $12,000. At the time of the walk, a combined total of over $60,000 had been raised and donations usually still come in for a while after the event. The event was a blast! Mommy and daddy got to take me this year, I was a little too young last year and I had not been home from the hospital for too long. The walk was the morning of the time change, which meant that not only did I loose an hour of sleep, I had to get up earlier than I normally do to be at the mall before store hours. Daddy turned on the lights very low to slowly arouse me, but I acted like I didn't see it and kept sleeping.
This is a picture of mommy trying to wake me up. She was trying to change my diaper to get me going. I just ignored her, rolled all the way over, got comfortable, and kept right on sleeping. Despite all my efforts, they kept persisting and I did finally wake up. They got me dressed and ready. I was a little unsure of what was going on. I thought for sure they were taking me to another one of those silly doctors. To my surprise we pulled into this big parking lot next to this big building. They told me it was a mall. I was excited! I had never seen the inside of a real mall. It was a georgeous day and the sun was shining as mommy and daddy got me out of the car and into my stroller. We walked into the entrance of the mall and there were more people than I have ever seen in my whole entire life. I slowly started running into my cousins, aunts, uncles, and grandparents. I was excited to see them all. I was even more fascinated by everything that was going on all around me. There were a lot of teams dressed up in costumes. I think our teams costumes were the best. We are and always will be "Liliana's Angels". Here is what some of our costumes looked like. These particular ones were made by my Nana (grandma).
Each family in our group was responsible for their own costume with the angel theme. I would have posted more of the other ones, but mommy and daddy did not get any good shots of them. You can kind of see them in the next few pictures. These next few pictures are of most of our team members. The first one is us waiting for the walking to start.









The rest of the pictures were from after we were done walking. It was hot in the building and everyone was tired including me. Daddy got me out of the stroller to keep me happy since I was starting to get tired and crabby. The second one is of me and some of my cousins. This was the first time that I have been together with all of them at the same time. We had lots of fun. The third picture is daddy time. I love when he holds me like that. I was so comfortable I could have fallen asleep. The fourth picture is my uncle Steven (daddy's brother in case you couldn't tell) and my cousin Logan...he's funny. Did you see his face in the group picture up there? The final picture is of me, mommy and daddy. We all had a great time and look forward to the next Stride & Ride. We hope you do too!!!

Other recent developments:

Mommy and daddy are increasing my CPAP time. I'm currently doing CPAP during the day until around 1am. The plan is to try and get me doing it 24 hours a day.

I've been doing longer periods off the vent. The other day I did about 3 hours straight off the vent. The next day I did about 4 hours straight.

I'm going to be losing my Medicaid coverage. This means that I need new insurance. Daddy is going to have to go back to being a staff nurse and take a pay cut. It will even out though because he will get health insurance through work instead of private which we have now. All mommy and daddy have to do is make sure that all of my doctors will still be covered under the new insurance. Also, I need to get an order from a doctor and a letter describing my condition and nursing requirements. That information will have to be submitted to HAP who will then review it and either approve it or deny it. This is just too much stress for a youngster like myself. I'm sure they will get everything figured out.

Anyway, that's my story and I'm sticking to it.