Well, here we are at the 9 month mark. This journey has been immense, and it has only just begun. Paige has been a pure blessing. She has saved my life in so many ways. She teaches me more than I would have ever known before. Her needs are so simple and so complex at the same time. She is physically demanding but emotionally laid back as if she’s trying to say “chill out mom, everything is going to be alright!” I’m starting to learn to listen to her more and more.
She is still trying to approach 11 lbs…last week she weighed in at 10 lb, 13 ounces. I am hoping she is staying on her targets on the WHS growth chart. Her 9 month doctor appointment got moved to next week.
What’s new? She giggles consistently now. It’s very subtle but sweet. She will try and mimic clapping. She is eating baby food once a day and is really fond of bananas. She even signs by putting her fists together when she wants another bite. We ask her if she wants “more” and she signs. I was pretty amazed by that, but her speech therapist was also convinced she was trying to communicate to us. She really enjoys holding onto either one of her thumbs with the opposite hands. It’s her new “go to” position.
What’s getting old? TORTICOLLIS…seriously? We work and work and work to try and have her not favor her left side, but she always goes back to that position…especially on bad reflux days (although her GI doctor would disagree). She is going to mid-line more often and bringing her hands together and putting them in her mouth. Speaking of REFLUX…I still don’t get it. Her doctors say her reflux is controlled…her therapists say “we need to get this reflux in control.” She does not puke most of the time. Only if you move her during or right after a feed, but there are times we are working in physical therapy that it is very obvious she is struggling with something. The doctor says it is reflex versus reflux. Obviously, Paige is developmentally delayed…and the doctors say she just doesn’t have the whole swallowing and breathing thing down pat (which would explain the hiccups all the time). INSURANCE COMPANY…talk about red tape! I feel like they send me on a wild goose chase just to turn me down. I’m still trying to figure it all out.
Paige’s current health is excellent. No seizures, no fevers, not even a sniffle (knock on wood). I know this bubble will not last forever, but I’m going to enjoy it while I can. I wonder what percentage of WHS kids get their first seizure before 1 year of age. If you can respond, please indicate how old your child was for their first seizure. Paige has a fairly large deletion with both WHS critical regions deleted (including LETM1), so I’m 99.5% sure seizures are inevitable. Some may say I’m being negative, but I’ve done my research…and honestly, I’m just being real. You can hope and pray all you want for something, but God already has his plan laid out. I stay positive by reassuring myself that we can handle it once the day comes and praying for strength on the hard days.
We are so thankful for every day we have for Paige. Her smile can stop time in it’s tracks.
Wishing you and your family good health and good fun!