Hello Everyone,
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!
Sincerely,
Keely Absher
(Paige’s Mommy)
Paige loves to play with beads. They really get her attention and are easy to hold.
Tried the Baby Bumbo and Tray for the first time today.
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Love this!!! Thank you for posting this awesome update. She looks incredible. The signing is so exciting, as is the fact that she is loving bananas. Elsa never has been fond of anything! I think this is huge. So glad, too, that you’ve been able to keep her healthy. Congrats to you all — I need tips! Elsa had her first seizure at 10 months, and another at 11 months. The dose they gave her at 10 months was NOT sufficient, just a trace amount of Keppra. She needed much more. Her first two seizures were pretty bad. Keppra kept her under control until 2.5 years of age. That’s when she switched to Depakene/valproic acid, which has been good for her (she just turned 4). Elsa has had 3 big seizures and has also had absence seizures on and off. I think your viewpoint on seizures is very realistic. But it’s no fun waiting for the other shoe to fall. As for the reflux — Paige’s sounds EXACTLY like Elsa’s, and we did not get it under control until she got on Prevacid. Until Prevacid, we had to be SO cautious during therapies, school, pretty much everything. Our insurance company just decided not to cover Prevacid in 2016 (grrrr), and so now we are trying something new. It’s working OK (Lansoprazole). We are using that until, hopefully, our letter of medical necessity for Prevacid is received and approved. Happy 9 months Paige! Your smile is absolutely contagious! Need to see it in person soon ;o)
Hi my name is Kenia I have 6 months old daughter named Madison she has WOLF-HIRSCHORN syndrome and it’s a small portion of the chromosome broken
Shdown started at 5 months and we been in the ER for 3 times due to sizures
She is now 6 months and on KEPPRA 2 times a day and weighs 11 pounds she got delayed in many areas we are working on trying for her to sit down and roll that’s our goal.
Hope your little one does get the sizures any time soon.
Madison sizures start like blinking her ayers and tuich and her body goes weak then she comes out of it but if she is running a fever it’s gets worse by the minute she had one long sizure that lasted more or less 20 min while in hospital she stop breathing… but they managed getting it under control
Hi Anitra – Thanks for your words of encouragement! They mean so much…especially coming from a seasoned momma like yourself! Paige is on prilosec (omeprazole), and our insurance company also does not cover it starting in 2016. We did a letter of medical necessity in 2015, and then they only covered $10 off (thanks BCBS). Anyways, we are working through it. It’s just so hard to tell what’s going on. The ENT at Lurie’s did a scope on her and said if there is acid coming up, it’s not showing any signs in the esophagus. GI (Dr. Fishbein) and ENT at Luries feel we have it under control with the Prilosec. Can’t wait to meet you and Elsa!
Yes, can’t wait to meet!! Kenia brings up a good point — in all of Elsa’s big seizures, fever was a catalyst. So keeping Tylenol at the ready at all times is good. Not all seizures are this predictable, but in case Paige has seizures that are similar to Elsa’s, fever management could be really helpful!
Yes, I will definitely keep that on hand. That’s a great point. It’s one of those things where I know I have it somewhere…but better to keep it really handy because if you are in a panic, you will definitely not find it. I also always have pedialyte on hand too. We hated how they came in such big bottles because once you open them, then they expire after 48 hours, so we went on Amazon and bought them in the hospital-sized individual servings. Sometimes if I notice she isn’t urinating as much as normal, we will do an overnight slow drip of pedialyte to keep her hydrated. Other than that, we just wash a lot of hands and have my daughter change her shirt and wash up really good after school and before she touches/plays with Paige. I think we’ve just been lucky, honestly. She will eventually get sick (we all do…no such thing as keeping them in a bubble)…so we’re just enjoying this time right now as much as possible.
Hello Keely! I love the pictures of your daughter so much! She is so cute! My daughter Kristina was born at May with WHS and she looked so similar… Unfortunately she had a severe heart defect and she died being only 3 months old. I am always so excited when I see Paiges pictures because I can imagine how Kristina would be like. It makes me cry sometimes, but… more pictures and more posts, please!:) Wish you and Paige the best and hope you will be that 1% without any seizures and if not – I am sure you will be strong enough to handle it. Sending kisses for Paige from Europe xxx
Oh Anna, I am so sorry for your loss of Kristina. I know what you mean about wanting to see pictures even though they might make you sad. It’s bittersweet therapy. I will definitely keep updates going and pictures! I would love to see pictures of your little angel. My email is jimandkeely@hotmail.com. Paige also had a few heart defects, but they aren’t too bad. I’m sure that Kristina changed your life in the short time she was here. I bet it’s a lot easier to appreciate the little things in life. Hugs from across seas to you and your family!! Xoxoxo!
Hi my name is Michael my son is Nathaniel Suarez who just turned 5 in January and I’ll tell you they have been the toughest hardest,and happiest time of my life. Still it’s hard for me to put in words on any letter, email, or conversion I have. Nathaniel is my partner in crime, my sidekick. Nathaniel can do no wrong in my house or anywhere he goes, for he does not know any better, but is learning the words NO NATHANIEL, giggles and then continues with what he wanted to do. I love my son son’s and daughter. I only wish one day to hear Nathaniel say “DADDY” or wish to know that when he is smiling or laughing it’s cause he truly knows it’s cause I did something that sparked that humor. Nathaniel has had a tough journey his past 5 yrs however he is always full of happiness and always looking for his friend Mr.G Tube. Nate has feeding tube that he just loves to pull on his cord and make his momma frustrated he will pull it out accidently. But it’s the G tube that may help with your question on your child’s seizures or any other parents out there. Not that your child may need a G tube but Nathaniel has had too many seizures to count after his 1st birthday. A few that we heard the words we had to get you out of the room cause we thought we may have lost him this time. Those words are SCARY for any parent to hear. However it was miracle we meet Doctor Cortez who introduce Nate and us to the Keto Genic Diet, which is a no carb diet and has had Nathaniel 90 percent seizure free. I really don’t know the facts to the diet but my wife does know and is glad to share info with anyone if anyone may have questions 361-462-0416)
Hi Michael,
Nathaniel sounds like he is full of personality! I love that he knows when he’s not supposed to be doing something…and then pushes the limits. Paige also has a G tube…and I’m interested to know how you manage once they discover how to pull on it (yikes). I can feel your wife’s pain as you talk about how it makes her nervous he’s going to pull it out accidentally. Oh man…that sounds like some scary times with Nathaniel. He sounds like an amazing boy! I’ve heard of the ketogenic diet for seizures. One thing that I’m running into is that since she hasn’t had a seizure yet, they will not put her on any treatment to prevent. I would love preventative action since I’m certain she will have them, so for now, we just have to watch and wait. 🙂 Thank you for providing your wife’s information! I may be calling her some day. We are so fortunate to have such a great community of families willing to help each other out.
Hi everyone
My girl is 7 months old. We were diagnosed when she was 3 months. We are from cyprus and the sundrome is very rare in our country. I think we are the only ones to have it…. so i dont know much about what to do….
I will definerely want a guide line from you… we are doing physiotherapy now and she is doing good. We are trying to sit and roll. We had our first seizure 3 weeks ago and now im waiting for an appointment to do a brain test
We are 5 kilos now…
I would appreciate any help…
Paige is delightful and you sound like an amazing young mother who is able to handle whatever you are given to cope with. My daughter, Rochelle is 36 years old. She had her first seizure when she was about three months old. The seizures were especially bad during her first two years. They were usually associated with fever and infections. She still takes rivotril and phenobarbital to control them.
It is great to sit back, read your posts, and see you share and support each other. Rochelle was not diagnosed until she was 10 years old. You know your child’s diagnosis, what to expect, and recommended treatments. All of these are blessings but you still have the daily demands of a raising a child with different needs. I’d say, all of you are doing a fantastic job. Keep up the good work. It is not easy, but it is worth it.
I just have to say that she’s precious! My Nathaniel was a little shy of a year when he had his first seizure…scared the crap out of me. But only because I didn’t know what to expect. I wasn’t expecting it at all. At least you are kind of anticipating it, so WHEN and IF it does happen, you’ll be prepared. Just recognize it’s happeneing, stay calm, and have a plan. I panicked but only for 5-10 seconds…just enough that his brother realized it wasn’t normal and began reacting to my response. Just those few seconds and because of him, I snapped out of it. They are 99.1% controlled. He’s on Keppra, Depakane, and the Ketogenic Diet. It wasn’t until we started the diet that his seizures were controlled. He’s had seizures here and there, but mild enough that giving him Diazepam at home has kept him out of the hospital. We spent the 2nd and part of the 3rd year of his life in and out of the hospital….weeks at a time and thanks to the diet, he went 10 months without a seizure! Just keep the KETOGENIC DIET in mind if God forbid, episodes begin, there are other options. Best of luck to your little one, you, and your family.