Day 86
Her neck is getting stronger with tummy time!
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Day 85
Jack & Izzie spent the night with grandma & grandpa Bentley so Scott and I could go visit Mike & Stephanie's new baby, Michael.
Day 84
Izzie & I went to a mother-daughter Valentine's Day party. It was great! There were about 10 17 year old girls with Down's Syndrome there with their moms. Izzie was a hit - everyone held her. The people who hosted are the parents of one of my students. They also have a daughter with DS. They've been a big help answering questions and getting us involved. Scott went to the MDSC headquarters today and chatted with them about starting to help with the Bruins.
Day 83
We went to her neurology appointment and they were basically like "why is she here?"... They said she's doing great and the brain bleed will reabsorb and not cause her any issues. They said we will likely never see them again. LOL. Then we went with grandma & grandpa Bentley to Jack's swim lesson!
Day 78
Izzie and I made out way to a blood lab this morning... where it took 40 minutes to get blood from her because she bleeds so slowly. They couldn't find a vein in her arms to do so they pricked her foot and bled it. Poor thing hated it. I finished her birth shadow box with her birth announcement.
Day 77
So I thought I had posted this somewhere on the blog but I guess I didn't. Kids with downs syndrome have a much higher chance of having hypothyroidism. Because of that, kids with DS are checked for it at birth, 6 months and 12 months. Izzie was asked to be part of a study where she got checked every 2 weeks for awhile and now every month. The purpose of the study is to see if it's better to check babies with DS more frequently to catch it sooner. All of her tests have come back normal... until today. Her tsh level is supposed to be under 6.5. Hers came back at 10. So she needs to be retested to see if it was just a fault test or if she has it. If she has it, it's just a matter of taking a pill every day for the rest of her life with no other changes but people with hypothyroidism tend to gain weight more so it's something to keep in mind and try to keep her as active as possible as she grows up. I have hypothyroidism, for example.
Day 76
Just hanging out. She did well at EIT. Her legs are flaring out a little like a frog so we need to keep them straighter if possible to avoid hip issues.
Day 73
We went to the Boston Museum of Science. Jack loved every second of it. Izzie... slept mostly. I could be wrong but this may have been her first trip into Boston.
Day 72
Love the little tutu! We visited grandma & grandpa Bentley. Taking a picture with 5 people, two of whom are toddlers is tough!
Day 71
Today we went to the first ever Worcester Downs Syndrome playgroup. Met a lot of nice people and again got a lot of good advice and encouragement about the heart surgery and Boston Children's. Then we headed to a friend's son's 1st birthday party!
Day 70
This time it was Izze's turn to go along with us for her brother's doctor appointment. Then we relaxed. This is from her daycare lady, Donna.
Day 69
Ugh. Two appointments today too. First up was a cardiology appointment. They hooked her up to machines. Her heart is looking great (for what it has) - best case scenario. It's balanced still. Neither side is working harder. The doctor said she's doing so well that she may not even need surgery at 4 months - she could go until 6 months. The bigger, the better... and since she is SLOWLY gaining weight, it might be better to wait if we can. He doesn't even want to see her for 2 months. We're still waiting for the cardiologist from Children's to call. Then she saw the eye doctor. It's still too early to tell if she will need glasses however there are 2 things that could be very serious in newborns with downs syndrome. One is cataracts and the other I forget but good news - she has neither and it's very unlikely to develop after her current age. YAY.
Day 68
Izzie has been sleeping through the night for about a week now. It's roughly either 8-4, 9-5 or 10-6ish. Awesome! So she had a nutrition appointment today. She's 6lbs 10 oz, head circumference is 34cm and length is 19in. She isn't on the charts. The problem is... she needs to gain weight and get bigger to do the surgery. It's really hard for the surgery to go well if the heart is super small. It's so frustrating because she eats great but just gains slow. So guess what they want me to do? Wake her up in the middle of the night to feed her. I don't mind but SHE JUST STARTED SLEEPING THROUGH THE NIGHT! LOL. Oh well. Worth it. She also had a pediatrician appointment today too.
Day 67
Guess who is rolling over? I ran the video by her doctor and physical therapist and they both said it's real. She did it on purpose and kicked over and did it multiple times. Proud of baby girl! That's early for ANY kid.
Day 64
We all went to a down's syndrome playgroup in Tewksbury and met some nice people. Got lots of advice for the future but also for staying at Children's while she has her surgery and recovers etc... A "friend" on facebook wrote this book - just got it today.
Day 62
Happy 2 months Izzie! EIT said that there is a significant improvement in her tone - she's less floppy. She also can push up a little on her tummy and almost rolled over by accident. By the way, she was born low tone. That's something you are born with and never goes away. It's not necessarily a bad thing. Gymnasts have low tone, runners have high tone. you can improve tone but if you have low tone, you tend to stay low for your life - floppier.
Day 59
Izzie's first day of daycare! Already raising her hand (LOL). So smart <3 She did really well. :)
Day 57
Love anything zebra. Cuddle bug. Jack & Izzie hung out with grandma and grandpa so we could go to lunch and bowling for my birthday. <3
Day 56
This came a few weeks ago but I forgot to enter it. We visited grandma & grandpa today and watched the Winter Classic.