Life is busy and crazy. I have increased my hours at work. I now work 10am-6pm Mon-Thursday, which is a great schedule for me. I get to get up with the kids in the am, feed them breakfast, pick out their clothes, head to work and am home in time for dinner, tubby, pjs, play and a story. And I still have my Fridays off for aquatic therapy and our new addition Parent/Child swim classes. Edwin and I take the kids to the pool for 9:45am. Edwin does PT with Peter which consists of him in a vertical position being held under his armpits while he's encouraged to "kick" or "run" in the pool. He has recently began moving his arms as well, which is great. The "carrots" are floating pool toys that are placed just out of his reach and he'll "run" and reach to try and get them. This works his trunk muscles and it's a great workout and he loves it. I usually have Serena during this time and we mimic what Edwin does on a less "therapuetic" scale. She finally enjoys the water and doesn't cling to me anymore. This last 30 minutes.
Then the swim class begins. There is a range of ages and we have the youngest, I believe one of the boys is younger, but he is walking and seems more cognitively advanced than Edwin. Either way, it's lots of fun and there is singing, toys, and some basic skills. Currently we are working on getting Edwin to climb out of the pool...he can almost do it...he needs a little support on his rear, and gets the concept of putting one knee up. We are working on blowing bubbles in the water with both kids. They like to laugh while we do it but have yet to do it themselves. The swim class is also for 1/2 hour, so they last over an hour in the pool and do wonderfully. It's a super fun part of our Fridays.
Saturdays are hippotherapy and everything was going well until this past week. They tried Edwin on a new horse who is much bigger than his usual, Pedro (unfortunately, Dutchess who was his first horse fell ill and passed away a few weeks ago.) Well, this bigger horse is named Prince and he is much wider, which meant Edwin's legs were really spread apart. Also, Prince didn't have the horse-shoe shaped hand bar on his sadle and Edwin didn't really know what he could hold onto for support. He got very tired and frightened and began crying (a first) and was reaching down to the therapist to get him off. He was so upset that even when they switched him to Pedro, he didn't want to do it anymore. So we didn't push it and they promised to keep Pedro as Edwin's horse and he wouldn't have to ride Prince until he is bigger. Hopefully this week we will get back to tear-free hippotherapy.
The AFOs are going ok. He's tolerating them better and will take steps in the walker with them on. He is much better with the walker without the AFOs, although he still has not figured steering out and of course his feet turn out quite a bit without the AFOs. He wants to be upright even more, and cruises wherever he can. His weakness in his trunk is still very evident, but we are slowing making progress. It seems like it will be forever until he is walking, or even standing unassisted, but again, I have to keep everything in perspective.
Both kids still drink only milk, and only from a bottle. Trying to get Serena off of the bottle is going to be extremely challenging, and frankly, it soothes them and makes them happy and I'm not that worried about it. They get their teeth brushed and have been to the dentist and I am not totally freaking about them still being on the bottle. We'll try sippy cups again in a few weeks.
Serena is repeating words like crazy and is now answering questions. Her answer is almost always "no" but sometimes she'll say "yeah." She said "ten" yesterday and I am trying to get her to count. She can point to her hair, nose, belly, and I'm working on cheeks. She will give Edwin his bottle for me when she follows me out to the kitchen, and she will pat his head and hug him if he cries. She is a big help sometimes! She is starting to really pick up after herself and likes to "clean" the floor and try to use the vacuum. Her voice is still very hoarse and "duck" sounding at times and I'd be lying if I said I wasn't worried about starting pre school next year. I really worry about her being teased and hope with maturity comes an awareness of controlling her voice.
As far as speech we haven't had any luck with finding a speech therapist who helps much with either child. Edwin is still non verbal and Serena could use ST as well. Edwin would probably benefit from signing, but to be honest no one has been very consistent with it, including myself, and I don't know how to make it a part of his day when we have 3 different nurses and an EI team that doesn't seem to push it. I guess I should lead the way and really do sign with him. We have all the videos, it's just a matter of implementing it. Edwin won't pick it up like Serena would, or our friend Hallie, but I think he could do it with a lot of practice and guidance. Truth be told, I am really worried about him cognitively, but I try to push fears out of my mind for now and do everything I can to teach him and help him grow and develop. Time will tell how much impact his early birth and traumatic first 4 months of life have effected him. I want so badly to see him walk and hear him talk. I try to be strong but sometimes it does cause me to break down to think of how delayed he is and wonder what his life will be like. I hope I can make it the very best life.
Anyway, things are going well and we have so much fun with the kids. They are such a joy to be around. Their birthday is coming up and we are doing a Curious George theme! I can't believe they will be two. They have come such a long way and I am so unbelievably grateful to have them in my life. I can't even fathom things going another way, whether speaking about our choices or things out of our control. It is an honor to parent these children. I still think about their birth on an almost daily basis and it is still painful for me. I wonder if it will ever feel less painful, less traumatic? I know I will always treat Serena and Edwin special because of all they've been through and I know they will be spoiled to some degree and I'm ok with that. I think they deserve it!
I've also been thinking about when we could ever think about having another baby. I have decided that I am going to go to law school part time nights next fall. It will take me 4 years to get my degree, and of course I have to pass the bar. That means realistically we are talking 5 years from now, which would make me 30-31. I really want to have more children but it's scary and it has to be at a time that I can commit to potentially months of bedrest since we really have no idea why I went into PTL and we don't know if I'd have twins again because they were spontaneous. It's a lot to think about, but I figure things will happen as they should and 30 or 31 isn't too late, and it will give us a good sense of S & E's needs since they'd be 7 years old. WOW! I wonder what they will be like at 7? I can hardly believe they'll be 2 in a 2 short weeks!!!!
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4 comments:
Hi!
How I've missed reading about Serena and Edwin! So happy to have an update. Nate needs speech therapy too. He is also getting his eyes checked again for glasses.
I could not imagine life without Serena and Edwin either. :-)
I hope they have a wonderful birthday party! We do have a to get together for a playdate!
Sounds like both are doing well! I am looking into putting Kellar in hippotherapy, the center is about a mile from my house and I called but can't remember what age they start them at. As for the bottles, Kellar turned 2 in April and he still will only take his milk from a bottle! I have tried warming it up and putting it in his cup and he throws it down. Speech is another dept we are still behind in, though he has improved greatly I know he has a ways to go! Wow I can't believe they are about to be 2 either, and like you I want another kid but I'm not sure about chancing it..
I know what you mean about spoiling - I see myself doing it with Arianna alot. Like you there is still barely a day that goes by without me thinking about how hard she's had it in her short life and I know I do things to and with her that I wouldn't if I didn't feel so bad about her struggles. I don't think that will ever change... this guilty feeling is just awful.
As far as having another kid - 30/31 is NOT too old to have another kid if that's a concern(heck, I'm 30 this year)- it will be a good age with S&E as they'll be more independent and helpful (hopefully).
One this I learned is that it was much harder going through a pregnancy (successful as it was) with a toddler (and one that was potty training too). Although hubby was fantastic, my 6 weeks of bedrest was really hard on both of us.
As you know - getting a good team of docs behind you and being SUPER proactive will get you positive results. I can guarantee your paranoia (which you know I went through) will keep the scenario you had with S&E from continuing. Cervical dilation is very rarely spontaneous without pPROM - its usually weeks in the making. A short/dilating cervix is not something they usually watch for until after 24 weeks except in the case of previous preterm birth... unfortunately.
We absolutely are still checking in! And 30/31 is NOT too old to be pregnant... I wouldn't worry about this at all. I know that we decided to try again sooner than we might have otherwise because of age (Sharon is 37 and we did not know for sure that the frozen embryo would 'take' so we might have had to do a whole new IVF cycle...we still are keeping our fingers crossed that things continue to go well). But feeling comfortable with Hallie's issues before embarking on this again did come into play for us, decision-wise. We know that we have a long road ahead of us on the food front, and we can't say that it will ever be completely under control, but compared to where we were last year, we're in a different and much better place and hence able to think about devoting attention to a new baby. And still it is frightening as heck...
Don't worry about the bottle (says the bottle-pushing mama) and do see if you can get Edwin in front of some signing videos. The easiest ones to start with are the Baby Signing Time ones---they are very very compelling for little kids and do a great job of teaching multiple skills--concepts and receptive langauge; signing; letters; and speech. They really changed Hallie's life. So give them a whirl, and use them over and over (Hallie really learns well through repetition...I guess that most kids probably do).
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