Jim has been gone since last Monday and we are ready for him to be home! If all goes well he will be home just before Molly goes to bed tomorrow night.
My Mom and I had a good week with Molly and kept very busy. I came down with a cold that I seem to have passed on to Molly as well, which has made the week feel a bit longer. My Mom flew home Sunday morning and I am flying solo with Molly for the first time! I can't believe she is almost 17 months old and this was my first time going it alone - I've been lucky!
Molly has been getting stronger and more mobile by the day. She is now back to regular crawling (as opposed to her one-leg crawling) and has learned to transition from her belly to sitting and also out of sitting back to crawling. This was a big milestone and one I wasn't sure she would be able to do given her short arms. With the help of her physical therapist we put her into a "tall kneeling position" where her hands were up on a bench and she was on her knees. I was nervous the first time, but she tolerated it just fine. She can't kneel for more than 30 seconds or so, but I'm sure that will improve with time. She has scars on her knees, so this might be part of the discomfort in addition to using muscles she hasn't before.
On Friday we had Molly's first at-home infusion and it went very well. What a difference from an overnight stay in the hospital! Molly was able to be in her own house and even able to crawl a bit while hooked up to the IV. Her port worked well again and didn't seem to bother her a bit during the treatment. The nurse is very nice and seems to know her stuff, which makes me feel comfortable with the new situation. She became a bit hyper towards the end of the infusion, which is common with the medication. Kids often say that an hour or so into the treatment they begin to feel a lot better. I never would have guessed it could have such an immediate impact.
Dr. Plotkin had his last OI clinic this past week and is now officially finished seeing patients. I am so sad that he is making a change. This is a huge loss for such a small community. It sounds like there is an endocrinologist at the Children's Hospital that is going to take over Dr. Plotkin's position, but that is only a rumor at the moment. I am hoping that they will find a doctor to assume the position so that the clinic can continue. Time will tell.
We have been swimming A LOT. I think we were in the pool with or without a therapist almost every day last week. We have found a therapy pool that I can take her to for just over $5 a visit, so we have started doing that twice a week in addition to meeting with a therapist once a week.
I am exhausted by all of the therapy appointments we have been having and feeling a little down about how much time they take up. We have been meeting with her PT once a week, two different water therapy appointments (some weeks) and now we have a developmental therapist coming to the house once a week. I am hoping that the further we get out from her surgery the fewer of these appointments we will require on a weekly basis.
I am so happy with how well she is doing after the surgery. She seems to be feeling much better than she was even a couple of weeks ago. It is nice to see her mobile again.
She is also saying a few more words and trying to mimic new ones all the time. Most of her words sound nothing like what I'm saying, but I'm sure we will get there :) She now says: Purple, Pool, Woo Woo (for the dog), book, Teddy, Bye-Bye, Mama, Dada, Cah (car), Papa (papaya), Cacker (cracker), and the list is growing by the day.
Molly has been a bit crankier today, I think because of the cold, and bit me for the first time when I was cleaning her up after lunch. She bit so hard that I screamed out and then told her "No" at which point she burst into tears. As I explained to her that it wasn't nice and not to hurt me she grabbed at my face with her nails. She settled down soon after this, but one of my friends said... "welcome to toddlerhood". Uh oh, I didn't think it would start so soon.
All in all she is doing very well and doing more than I thought might ever be possible. I will post pictures and videos soon.
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