talon is 6 months today 1/17/14

talon is 6 months today 1/17/14

every morning that there is a trip to the doctors office i always prepare myself for bad news and im pretty sure that is what the daily life is for families that have children with whs. i spent weeks preparing for this month. why? because it was revisit to every specialist. so far we visited cardiology, the eye doctor, (in which that visit scared the living crap not only out of me but the eye dr as well due to talon not responding for a few seconds) we saw genetics and finally neurology. so far with talon has to take more of his medicine due to the fact that he is now 12 lbs 9 oz. we can officially take cardiology and genetics off of our list of specialist. genetics gave us referrals to get physical therapy at lutheran general hospital and for a plastic surgeon who deals with the design and placement of the helmet. so talon will be wearing one of those next month possibly. it is possible that talon may need glasses as well. what was so nice about the genetics doctor is the way how she talks to us. she prepares us in advance. for example when she told us talon had whs she gave us all the information the good and bad of whs and said even though this may not be the case for talon it was like we knew that if there was something bad we already had a clue of what it may be. she also feels that more physical therapy will help talon a lot more as in a way hes kind of still like a newborn. it doesn’t bother me at all that talon is developing slow. the way how i see it i can enjoy the “newborn” phase a lot longer than other moms. in a different group im in i see how other moms are saying how time is flying by and for me talon is just doing the stuff that most of their babies are doing. he gets excited and laughs and now he does his baby talk so much you wonder what can he be saying when all he does is eat, sleep, poop, and tummy time.

 

i havent met any other families that have children with whs but there has been some families that have reached out to me or that we began to talk. at times i wish there was more people i spoke to that shared a common… hmmm i dont know if its interest but someone who knows what its like. in the other group im in that pretty much is for supporting breast feeding and stuff i finally explained talons condition and they dont understand how im so strong and how i can do it. half of the time i dont even know how i do it. if it wasnt for coffee, a day planner, and talon’s facial expressions i be a mess. but still, i wish there was just that one friend or someone that i felt like i knew that if i said something about talon’s health they could say, yeah i remember that day or knew the feeling. i was expecting this month to be as painful as that first time but so far talon is going great and so far we have 3 specialist off our list of doctors. today he is 6 months. he weights 12 lbs 9 oz. hes 24 and 3/4 in. and his head is 16  1/2 cm. he laughs, he coos, he notices and follows people or sound, he is slowly starting to get head control but isn’t fully there. he enjoys showing everyone his foot. each day that i see him grow or do something like laughing it makes me feel so happy. he may be a little behind in other people’s eyes but the way that i see it. he’s doing things when he feels comfortable enough to do them. my biggest fear now is seeing how people will handle talon wearing a helmet? my biggest goals making sure i dont miss all the fun and exciting things he does now.

 

3 Responses to prepare for the worst but hope for the best…. (talon liam cuyugan)

  1. shirley bidnick says:

    I was just wondering if you see all those specialists in one place, in one day, at a special clinic. It does seem like a lot of appointments. I remember that time in our lives. It was nice to take some specialists off the list, but then there were new ones to add, just like there is for you. It is good to hear you say you enjoy your sweet Tallon. Your baby is different and your life is different but it sounds like you have already figured out different can be good, very good, and better. You are not alone, even though you may feel that way sometimes. There are many of us who love and enjoy our child with WHS, and spend too much time living in fear of bad news and going to doctors appointments. Talon is adorable the vocalizing sounds wonderful. I always look forward to your next post.

  2. jjenkins says:

    I wish I could give more insight onto when things start getting better and easier, but we are only a few months ahead of you guys in our journey. (Caroline is 8.5 months) I know when we first got her diagnosis, which was at 1 month, we began seeing 8 specialists, and those first few months thereafter where complete chaos, so much so that I don’t even remember a lot of them. 3 of her doctors are local, and the other 5 are two hours away, and there were several weeks in a row that we were making the 2 hour (each way) trip 2-3 times a week, and it was just for her “baseline” visits. Even now we haven’t narrowed our list down any, other than her GI which we will see again in March and then hopefully get rid of as long as she doesn’t start having any issues, but we have gotten to the point where other than her pediatrician, she only goes to see the specialist every 6-12 months just for checkups to make sure she is still doing well.

    He sounds like he is truly a very happy little boy, and really that’s all that matters. I know my state of mind when it comes to Caroline is that as long as I can keep her happy and healthy, that’s really all I can ask for, and I can accept if the other milestones don’t come until a later time. I’ve told people on numerous occasions the same thing you mentioned, how I just get to keep her in each stage of life for a little longer than most people do. I mean what parent hasn’t said that they wish they could keep them babies for longer, and we get that, even though it can be challenging at times.

  3. miyah says:

    Well you’re not alone my daughter is now 7 this road has been a journey but ive enjoyed it…we’ve had all kind of doctor visit shes doing great now..she gets colds alot so we stay in the doctor office for colds alot..she has a walker and and pushes herself back she stands with support just continue to get therapy because it helps and make sure you have early childhood intervention it helps…good luck

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