10/24/12
10/23/12
She's got chunk!
It took 3 1/2 years but I finally have fat to pinch!! Notice the double chin!!??
I took Ailyn to a sick visit and had them do a weight check. Ready for this?? Are you sitting down???
DRUMROLL PLEASE!!!!!!!!!!!!!!!
This girl above now weighs 29.8 POUNDS!!! AMAZING!
I knew she was gettng heavier. My back kills me from having to carry her all the time. She feels solid now.
Ailyn still drinks about 20-25 ounces of Pediasure in a 24 hour period. I have weaned her off most day bottles. Yes, bottles. Honestly, we do what we need to do to get her to drink Pediasure. The doctor still wants me to let her drink whatever she wants throughout the night. Which is 2 bottles. (No worries, she goes to the dentist every 3 months for cleaning) I hope that soon we can wean her off of night feeds. This Mommy is very tired.
Ailyn loves rice krispies with whole milk and half a banana for breakfast. For lunch, her favorite is cold cut turkey. She can eat 4 pieces. She eats little snacks throughout the day. Whenever she signs "eat" we will feed her. Afterall, a few months ago, she barely ate. Dinners are big for her. She loves pasta, chicken roast with potatoes, tuna casserole and much more. She eats a very good portion of it too! This is MUCH more than what Camden ate at 3 years old.
We go to the GI next week. I'm sure the GI team will be thrilled with her progress. Ailyn's Gtube site is still leaking and sometimes will bleed a lot. In fact during this photo shoot, I noticed her shirt was dirty. I lifted the shrt to find her site bleeding bright red blood. I think it's granulation tissue. But, hopefully they can put my mind at ease next week.
I honestly never thought we would see this day. Ailyn just was never a big eater. She always loved to taste foods but would never eat more than a few bites. It's one more difficult thing Ailyn has overcome. She amazes me.
I think we will have a party when we reach 30 pounds!
Can you tell this little girl is sick?? She's actually miserable. Coughing and throwing up. Her nose constantly running. The steroids are upsetting her belly. But, in true Ailyn fashion, she can still smile....even if she was cracking up at me falling over ;)
A little fun and more germs
After a week of being stuck in the house with sick kids, we got to get out! My friend called me and asked if we could go to the pumpkin farm. At the time it was raining......but we didn't care. But, when we got there it was sunny and 70 degrees.
Miss impulsive herself wasn't listening to me and put her finger in a pigs mouth. Of course the pig bit her! But, he must have been a friendly pig. He did little damage....thank God!
Camden and his friends ran all around the farm. I wish it was easier for Ailyn. I know she would love to run right along with them.
But, poor Ailyn was traumatized by the pig bite. It ruined her whole day. I have never seen her so still and quiet. (Maybe we need a pet pig)
I wish I could say the germs are gone but no. Camden is still congested. He's back to school
but feeling crappy. Ailyn's cough got a lot worse. And, like every cold she gets, it turned into croup. She also has an ear infection.....again. So she's home with me this week.
We got the results of Ailyn's EEG. Normal. But, the neurologist wants to do the 48 hour test now .I 'm not sure what to do. The 4 hour EEG was NOT easy with her. She doesn't have episodes often. In fact she hasn't had one in 2 months. So we wouldn't medicate her at this point. I'm thinking we should wait until she's a little older??
Notice the chub??? Wait until you hear how much she weighs now!!!! Blog post to come. It deserves it's own post!
10/16/12
A month of Ailyn
Ailyn continues to bloom in school. She loves going to school. She even started to pay attention to the other children. A little boy watches over her in class, always making sure Ailyn is OK. That makes my heart melt.
Ailyn wears her braces to school everyday. No complaints. When we get home she asks to take them right off. She will sigh a huge sigh as she rubs her legs.
We had our second IEP meeting a few weeks ago. Her therapists are thrilled with her progress. They need to revise her goals already. I really like all her therapists. I think each one is a good fit for Ailyn.
We still go to the children's hospital 3x a week. Her favorite is PT with Yuba the dog. She asks for Yuba all the time. I think it's time Ailyn gets her own doggy!
The bad behaviors are back and worse than ever. Let's see...... in one day she threw a ceramic bowl all over, spilled 4 drinks (on purpose), scrathed, pinched, it all of us, poured cereal everywhere.... and much more. She laughs when she is caught. She cares less about time out.
In 3 1/2 years, I think Ailyn has slept through the night twice. She wakes up and can't go back to sleep...sometimes for hours. Night is her biggest time to get her calories in. I think her body is conditioned to want to eat all night. And, eat she does! She now will down sometimes 3 8 ounce bottles!
Feeding is going AMAZING! Having her tonsils out was the best ever! She eats every meal and a lot of it! Sometimes more than Camden....which isn't saying much. Last time we weighed her, she had gained 3 pounds since the tube came out!! She is about 28 1/2 pounds now!!!
Ailyn had a 4 hour video EEG last week. I woke her at 3am and kept her up until the test started at 10am. We were looking for any seizure activity. No results yet.
Doesn't she look so teeny in that big school?? She does so well with her walker. She will play anyone though. She will pretend she can't walk fast. I think she loves the praise she gets.
Since school started, Ailyn will sit longer for projects. She painted this pumpkin for a whole minute! And, last night colored a picture for 2 minutes! Now that is progress!!!
I'm loving my 2 1/2 hours ALONE! I do everything from lounging with my feet up watching TV to painting my nails. Oh yeah, clean and do wash too. It's amazing what 2 1/2 hours does to refuel you!
Camden is doing much better in school. He made a new friend and had a playdate over his house. I'm glad he's over that!
The kids both have bad colds right now. Ailyn stayed home yesterday but went today. Her whole class is coughing. It's really gross.
So there's some random thoughts.... not very organized. But, that's how life seems to be going right now. I just got a call that Camden isn't feelng well. Guess we will have another sick day.....FUN
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