Countdown to Ciaran's 4th birthday

Lilypie Fourth Birthday tickers

Saturday, March 14, 2009



STANDER/W TABLE...Donated, thank God, if not, it would have been $3,000

WALKER...this one was donated, but the one that was ordered for me was about $2,500

KAFO's...$3, 700

Special Shoes...$75.00


GLASSES..$300 (Still waiting on insurance to reimburse from last Sept)
Mommy and I travelling to Phoenix (a 4-6 hour trip) 42 times over the last two years
Juggling 4 therapy appts a week (Physical, Occupational, Speech, Developmental Specialist)
4 surgeries to date from a brain surgeon...BILLIONS, I'm sure!!
The opportunity to see our baby girl Riley STAND UP...
to see her progress mentally like any other two-year old...
to see her ride a bike and feel the wind through her hair...
to have her healthy...
to HEAR her say, rather yell "MOMMY"...
to HEAR her say, "HI DADDY" everyday, nonstop, for the first 20 minutes when Daddy gets home from work...
to have her grow physically at the right height and weight for her age...even if it is on PediaSure...
to see her throw temper tantrums like any other two-year old...
to hear her SCREAM at the top of her lungs just because...
Gee, Mommy could get a new car if we traded in all my equipment...isn't that crazy?!?! Just kidding, Mommy doesn't want or need a new car but isn't it an interesting synopsis???

Friday, March 13, 2009

My new KAFO's & other equipment

These are my new KAFO's and my new shoes. Cute, eh??? So far I like them very much. I am only wearing them for about 2 hours now. The time that I wear them increases everyday.

I have not been a happy camper when it comes to using the walker. It is not the exact type that the doctor prescribed but it is one that Ann, my P/T, had for us to use in the interim while waiting for mine. I always make it a struggle. Mommy has been showing me pictures and videos of one of our on-line friends, Ethan, so I can see how he does it. She's hoping I will catch the drift...we'll see.

Ann is trying to help me move along the sofa.

This is my does just that...stands me up. Laura, from the Parent Network donated it to us. This is a REALLY nice stander.

Daddy and me reading some books. I love my Daddy!!

Pic of me not too happy to be in the stander. This pic must have been from the beginning of the stander days because I ask to be in it now. I love being tall.
The cool table that came with the stander also is perfect for me in my wheelchair. Here I am checking out the latest toy if I don't already have everything in it. hehe :)

Phx results

Boy, did Mommy and I have a busy week. We were exhausted, needless to say. We ended up leaving BHC at 2:30 Wednesday morning because I had to be at St Joseph's Hosp at 7:15 for a CT scan. Well, because we had left so early, I slept most of the way and we didn't have to stop which made us arrive an hour early...yippee, an hour early to a much to do at 6:30am. :-/

This first pic is of me waiting for my CT scan...can you see the excitement on my face?? Gotta love the bedhead also :)

My second appt was with audiology. I needed a hearing test and we have been trying for about 9 months to get one done. Julie, the doc at CRS was wonderful. She did several tests and I was so good for her that she was able to complete them all. My hearing is fine...Yea!!

Thursday was a tough day...really tough day. Mommy and I were on the road for about 12 hours all together.

My first appt was with Katherine in neurology. We told her about all the impressives things I am doing now like counting to 20 and doing my ABC's. We had a big discussion about me and my eating habits, which as many of you know, are pretty much nothing. ;-) She told Mommy not to worry too much about that now because I am only two afterall, and she said to see how things go for another 6 months and then at that time we might do a modified swallow test with a speech therapist to see if I have any throat issues. The CT scan from the day before is going to help to see if my Chiari malformation (look it up) is playing a part in my not eating. Dr. Moss will tell me the results tomorrow on that. The thing that confuses Mommy so much is that I ask for food and tell her that I want to eat but once I have food I don't eat it. I will however eat Play-doh and my plastic food from my kitchen...hmmmm...

Katherine also told Mommy that sometimes kids don't eat until they are 5 or 6. She also said that Mommy may have to adjust to my world of eating instead of me adjusting to theirs. Another...hmmmm....

Here I am at the CRS waiting room and coloring pretty pictures. I am the cutest in my little RN scrubs.

After neurology, we had wheelchair clinic because Mommy thought I needed my seat adjusted. I have grown so much since I got it that Mommy had to tweek my backrest just so I could sit up. After much deliberation, the therapists at WC clinic decided I did not need an adjustment because I was sitting at the back of the seat and the only option was to get a bigger seat. They were afraid I would not be able to reach the wheels with a seat that was 2" wider and longer.

Next, we had to go to the Orthotics Specialists to pick up my KAFO's. Mommy has been waiting anxiously for this day. Once they put the braces on me, Sam, my orthotist, had to make some adustments to the braces. He wanted to make sure I wasn't being pinched in some areas and wanted to make sure my knee was bending properly. Then, Sam had to take the braces over to the lab and make his changes. He said he would be gone 15-20 minutes...well, 40 minutes later he came back. Mind you, we have been at the othotic office for 2 hours by now. I was just a wee bit restless...teehee...Mommy was pulling her hair out. But all in all the braces are done and fit properly.

THEN...we had to go back to the WC clinic to make sure I still fit in the seat with the braces on. All was well and I fit. Whew....what a day.

Friday morning we had an appt with neurosurgey. Dr. Moss said my CT scan was good and he didn't think my Chiari or syrinx was causing me any problems. As always, the best part of going to the neurosurgery clinic is seeing Ms. Mary. We love her!!

Here I am waiting to get a shunt series, which is x-rays of my shunt and the pathway of the drainage tube. I think they took 3 pictures.

I tried on Mommy's shades while we were on potty break. I am so stylish. :)

My last appt was with Dr. Peters in Opthamology. It is quite a hike over to her office but we love her office so it is worth the trip. Mommy told her I wasn't wearing my glasses (tattle-tale) and Dr. Peters said to just keep trying.

That concludes my doctor visits. Several of my doctors don't want to see me for 6 months...YEA!!! Other than my spina bifida clinic on March 27, I don't think Mommy and I will be going back to Phx until the end of summer!!!

Tuesday, March 3, 2009

Off to Phx again


I am so sorry that I am behind on my updates, but Mommy and I are leaving today to go to Phoenix. I have 7 appts this week. It really isn't too bad because we haven't been in 2 months. My list of appts are:
1)CT scan
2)Audiology-I need a hearing test
4)Wheelchair clinic
7)Eye doctor

I promise to update everyone with my past events as soon as I get back.