Looking at her now I find it hard to believe Mia’s the same tiny baby we brought home from the hospital 2 years and 3 months ago. She weighs 15lb and 5oz, can transition in a controlled manner from sitting to lying, roll like a boss in all directions and prop her self up on her elbows to reach for her toys or (more often) my phone.
She giggles like crazy, waves hello/goodbye, shouts with joy, claps in time and loves nothing more than being tickled or thrown up in the air. She responds enthusiastically to (all) questions with ‘uh huh’ and is getting increasingly vocal by the day, albeit still mostly vowel sounds.
Mia attends a mainstream nursery 2 days a week and has two half day sessions at the local special needs nursery. She continues to get fantastic support from physio, occupational and speech & language therapy, and she has a tiny little standing frame in which she will happily spend up to half an hour, playing with toys or watching TV.
Everyone who meets Mia seems to fall under her spell, she is just the most beautifully natured child and it’s amazing to see her little personality take shape. She’s a great wee eater too, as long as it isn’t anything too lumpy, and has about ten teeth with more on the way.
We struggle a bit getting Mia to drink enough, so we’re experimenting with various ‘sippy’ cups and straws, with limited success to date. Like so many things with our kids, we know it’s just a case of taking it slowly, repeating the same thing over and over and trying every option available until something, hopefully, clicks.
We had a couple of scares over the festive season with the usual round of winter virus/seizure activity and spent our second consecutive New Year on the intensive care ward. But, on the whole, Mia is really healthy and her seizures remain well controlled 99% of the time. Our hope is that, as she gets bigger and stronger, she will be able to better cope with the viruses that, for just now at least, seem to bring the inevitability of hospital admissions in their wake.
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Ross she is absolutely beautiful. It’s amazing how fast time flies. It was just the other day that she was born. Did she like sipping the pint?
What great pictures – she’s a beauty. We too have been trying to transition Frankie to a cup. But you’re right, it’s a very slow process, and we just keep repeating and trying. Hopefully they’ll both get there soon.
Ross, I love reading about Mia. She’s such a beautiful little girl. My son, Cooper, is 22 months now, and he weighs 14 lbs. Gaining weight has been the most challenging thing for Cooper ever since he was diagnosed at month 11. He is generally healthy as Mia. I’m wondering whether you ever considered G-tube for Mia. We’ve scheduled the operation for Cooper in early May. However, as it gets closer to that, I’m less and less sure about it. If you could spare some thoughts that will be great.
I’ll chime in on this… Having the tube is of benefit for so many reasons. We were hesitant in the beginning as well, but aren’t sure Kendall would have survived without it. When our kids get sick and are hospitalized, the tube is a savior. Having had Kendall on a tube for 5 years now, we can say with a great deal of confidence that it’s been huge for her development in so many areas. The challenge now is to get her off of the tube. It hurts nothing to have it and will come in handy when you least expect it.
Mia is very beautiful!
Kevin, she loved the pint but two beers is her limit – she’s a mean drunk!
Yaya, we haven’t had to consider a tube for Mia yet but, as Kevin says, I know it has been hugely beneficial to some kids. What I would say is that, going by the WHS growth charts, 14lb (6.4kg) is within the realms of normal so it may be worth printing that out and discussing with Cooper’s doc.
Kevin and Ross, thank you for your input. I believe that G-tube benefits many WHS children as you describe. I’m just wondering whether there is a possibility to avoid the journey of putting it in and then taking it out later. Also are there any WHS children who gained or who are gaining decent weight eventually without G-tube?
Cooper doesn’t like any type of milk and we started him on all kinds of solid foods when he was 9 months old. He has been eating well given his stomach size and he can now sometimes finish 235ml (that might sound little but it is a very high number for Cooper) of Pediasure per night. And that’s right, not per day. He developed (or rather we developed for him) a pattern that he only drinks milk while he sleeps. He only takes one nap during the day and that’s after lunch and usually he is not hungry. Therefore, overnight, he drinks several times from a bottle without waking up. It sounds like G-tube working overnight, doesn’t it?
Cooper’s doctors are using WHS growth chart to keep track of him. Even though he is gaining weight constantly, his plot dropped from being well above 50% percentile at month 9 to approaching -1 SD by now, month 22. Thus the doctors suggested G-tube. He barely gained 1kg in the last year.
Yaya, Fiona was the same way. She was always well above the 50% WHS curve, and then hit a year, and things plateaued for awhile. I’ve decided that our kids just don’t follow a curve. Everyone I talked to who has an orally fed kid had a lot of static weight between ages 1 and 2. Fiona has begun gaining again. We learned to feed her bottles in front of a favorite TV show, which doubled her willingness to drink, and we give her a tsp of DHA oil, which is 50 calories.
I LOVE HER!!! I always compare Nathaniel to her. He’s also 2years and 3months. He isn’t as advanced as Mia is, though. He stays home with me, but reading how she is in daycare and special needs nursery has now got me wondering if I should do the same. He isn’t around other babies to see what he could be doing. I’m going to look into to something like that. Maybe this could be my reason for going back to work…….maybe.
She is such a doll – just love following her progress. She is almost one year older than our Elsa and we see a lot of similar trends in their development. What a sweet sweet girl. I’ll add that the G-tube decision was a hard one for us. We ultimately went for it and have not regretted it. It’s a personal decision, so I would never push one way or the other. For us, we found that she’s become so much stronger, and food is something that we now can celebrate and play with, instead of being the source of constant sadness and frustration. You will make the right decision for your girl!!
Heather, thank you for your reply. Doctors told me that it’s very normal that baby’s weight fluctuates within first two years and as long as it stabilizes and keeps its curve, we shall not worry too much. Cooper has been keeping his curve so far, and we are waiting to be re-assessed at the end of this month for a G-tube in early August(I postponed the first procedure by three months, from May to August). We’ve been trying various calorie boosting strategies, but it’s always good to know of other people’s success stories. 🙂
Anitra, thank you for your input. I’ve heard many sad stories that after the tube is put in, gradually kids will lose interest in eating as they are always full. Is that the case with Elsa?
Hi Ross! You are so true, your daughter is becoming a big girl for sure! I remember her first pictures, so tiny, and now, I realize that time has past since then… Most parents find that time is going too fast and they cant enjoy enough of the ” baby time”. But for me, Time is an ally, because our kids are able to do more and more each day, specially during summer time!
Mia is delightful. She is developing at a perfect pace. You are telling a great story about an interesting little person. I enjoy reading about her very much.