Sunday, September 27, 2009

Reunion recap

Today was the hospital where the twins were born annual NICU picnic. It's a chance see your kids doctors and nurses and families you may have met in the NICU. The twins were in the NICU for 8 weeks, so I got to know some people pretty well. I took the kids last year and it was all still so fresh then, I was really excited and almost nostalgic to see some of the nurses and families I got to know. This year, those feeling were not there, but I still went, hoping to see one nurse and one family in particular. The nurse was there, but sadly not the family.

When you check into the reunion, you are given a name tag for your kid with the gestational age of when they were born and their birth weight. Then you walk around, looking for people you know and checking out all the other kids and their name tags. Most of the kids seemed to be two or younger which makes sense for the reasons I stated above. I can imagine the NICU reunion becomes less important as your kids age.

Of course, I homed in on all the twins. There are a lot in the NICU! Here was one set of twins, born at 27 weeks, toddling around. Here was another set born at 29 weeks crawling. And another set of 32-weekers playing on the playground.

I couldn't help it. Seeing all these twins in perfect developmental form brought back all these feelings of 'why me'. Of course I am so glad for these twins and their families that they are doing well. But seeing the twins born even earlier than my guys, oh I don't know if it's good for me to go to these reunions.

I just kept flashing back to the night the twins were born, and the doctors saying to us, "Oh, 30-weekers? Those are the big babies! They will do fine! No worries, they'll just be here fattening up for a bit!". And we believed them!

Friday, September 18, 2009

Working the system

For the past 8 months, Drake has been receiving weekly in-home speech therapy through our state's Early Intervention program. However, California's budget crisis caused a new law to be passed that says children in this program now have to use their private insurance for speech therapy. And the Early Intervention program won't bill their services to insurance carriers, so no more home visits. Since we have private insurance, I was given 30 days to find new therapist.

I don't mind using my insurance to pay for speech therapy. I like using my insurance, because hey, I pay for it anyway. And if it means more kids without insurance get services, that is great, too. What I do mind is that we no longer get home visits. My hubby and I both work full time and every appointment out of the house is a logistical nightmare with our work schedules and child care. We already have 3 out of house appointments each week, this would add a fourth.

So I complained and sniffed around and found out that if you can show documentation that you are on a waiting list for speech therapy, EI will extend your home visits/services until you get off the said wait list. So what did I do? I found the longest wait list ever, over a year, at local hospital who provides pediatric speech therapy. I got a note saying we were on the list, sent it off to EI and got my home visits extended 6 months! We will revisit after 6 months and if we are still on the wait list, well, we'll get another 6 months!

Workin' it.

Thursday, September 17, 2009

New tricks

I feel some big changes coming, people, I just feel it! Drake seems like he kind of plateaued over the summer after he started crawling on all fours in the spring. Don't get me wrong, that was so exciting it could have held me over all year! But, you know, I get antsy for the next thing!

The crawling has gotten faster over the summer and he has started crawling over things or with things. He can now crawl up low stairs or over your legs and will crawl with a book, blanket or toy in hand. But the changes I am seeing now seem less physical and more cognitive and verbal. He used to only be able to say one syllable and would say "Ma", "Da" and "Ba" (for bottle). Now he consistently says "Mama", "Dada", and "Baba". He is also repeating back words a ton more. He loves to say "bubble". Another two syllable word! I feel like we are on the brink of a little language explosion, and that excites me.

Cognitively, I am noticing changes, too. If you ask him to get you a book to read, he will crawl over to the bookshelf or find a book on the floor somewhere, and crawl it back to you. That is a three-step thought process I am told: first, get the book, then, remember where to go to get the book, then lastly, bring it to me. Awesome.

He got casted for his AFOs yesterday and I am excited to see what they do for him. Just by wearing his borrowed AFOs I have seen changes in the tone in his ankles and legs. He gets onto flat feet when standing much faster than he used to. And he is also trying to "walk" on his knees. He can sort of pull himself forward into a high kneel without pulling up on anything and then tries to "walk" on his knees.

I feel changes comin', I just do.

Monday, September 7, 2009

Benched

Drake has been working on sitting unassisted on a bench at CCS. When he wears a pair of borrowed AFOs, it really helps break up the tone in his feet and legs and he can sit for 30 minutes on the bench without falling off. 30 minutes is the max they will let him wear the AFOs since they aren't his and sometimes leave red pressure marks on his feet.

We were given the AFOs to take home and instructed to put them on him and have him sit on a bench for 30 minutes per day. It's amazing how quickly this exercise has strengthened his trunk and improved his balance! He can now do all kinds of upper body movements while sitting on this bench - clap, high five, play with a toy, eat - and still maintain his balance.

I took a video of him sitting on his bench today. You can see how he almost loses his balance a few times, but is able to self-correct. At the end, he is calling out for me, and even when he gets excited/anxious (which can kick in the tone), he still doesn't fall! This is only 40 seconds of video, but he ended up sitting there for a good 15 minutes, then grew tired of watching the US Open and wanted off...


video

Tuesday, September 1, 2009

Birthday re-cap and stats

I can't believe my little dudes are TWO! Time has flown. Their birthday is such a bittersweet day for me. Of course, I love celebrating their birth, but I so wish their birth had been under different circumstances. I remember looking at the clock at noon on Saturday, and thinking about where I was two years prior, hooked up to a magnesium drip and wondering what the hell was going on and if my babies would live or not if delivered at 30 weeks...

On a more positive note, they did survive and we had a little party for their second birthday with a few toddler friends and their parents. It was hotter than PANTS here in Oakland -- 90 degrees easily -- and luckily we had bought them a water table for their birthday present, which was a hit with all the kids. Everyone in the under 3 set arrived in their party best and left in nothing but a wet diaper. I guess that is a sign of a good party.

Today, we took them to the pediatrician for their 2-year well-baby visit. Drake is 27 lbs (44th %ile) and 35 inches (79th %ile). Long and lean. Lucy is 20 lbs (3rd %ile) and 32 inches (17th %ile). Short and skinny. Their pediatrician was so happy with both of them, though. She wrote a prescription for Drake's AFOs, so those will be getting ordered shortly. We also talked about getting him on the waiting list for theraputic horseback riding, which he can start at age 3.

I am currently researching preschools for the twins to start next year when they are 3. I really want to keep them together, so it is a challenge to find the right school. It seems I will need to find God or gads of money. All the regular schools that are open to special kids are either associated with the Church or really expensive.

The search continues!