I’ve had a couple of extra busy days – yesterday I spent most of the day at the hospital at Nahariyah with Yirmiyahu. We were there for follow up testing that was supposed to be done while he was hospitalized. But because one of the doctors doing one of the procedures had less time on her schedule than usual because she was taking off for Pesach, they gave our appointment to someone they deemed more urgent and didn’t tell us until we were sitting there waiting on the last day of his hospitalization. It was disappointing because I thought one positive of being at the hospital was that at least we’d get all the immediate medical stuff out of the way.
Well, that’s how things go sometimes! When they realized what had happened, they felt badly and they scheduled all three appointments on the same day so I wouldn’t have to come back three times. I really appreciated that. The testing was to determine how a bladder malformation was affecting his kidneys and to see how the problem could be remedied. (This issue has nothing to do with T21.) Thankfully his kidneys are still totally healthy, but test results have made it clear that he’ll need surgery to correct this. They want to wait until he’s one to do the surgery, and he has to be on antibiotics until then to prevent an infection that could damage his kidneys. We’ll go back to the hospital in another month for a detailed check of his kidneys and probably something else that I won’t know about until we get there.
Today I went to Jerusalem (with Yirmiyahu) for our first Me and My Mommy group at Shalva in Har Nof. They said that they’ve had an unprecedented demand recently that they don’t know what to attribute it to, but they have double the number of babies with T21 than they’ve ever had before at one time. In order to accommodate everyone, they’re giving parents slots for twice a month instead of weekly. (They also are cutting down the time that babies can be in the program from 2 years to 18 months.) The babies who come weekly get hydrotherapy, which Yirmiyahu won’t be able to get because of the new scheduling and that’s kind of disappointing. When I decided to travel so many hours for this, it was because I thought that he would get a full morning of services. Instead, he gets less than two hours that includes massage, speech therapy and physical therapy.
On the other hand, life is so full now that it’s a relief to only have to go two times a month! They said that they’ll definitely have a weekly slot for him in September. And I still feel the social benefit of being with other parents of babies with T21 is valuable. This year Yirmiyahu is the only one at our city’s child development center with T21 (it’s possible at the other health clinic’s center there might be someone else). Last year there were two children. So I don’t have a support network here and often I feel quite alone.
When I was at Shalva today, I met another mother from the north who was coming for the first time. I was really surprised to see someone else from this part of the country because at my interview they were shocked that I was willing to come so far, as if they had never had it happen before. I asked her what her motivation is in making the long trip, and she said that her one year old daughter only gets physical therapy once a week (like us) and there’s no other support (like us). When I told her that was also our situation, she asked me if we were also getting intense pressure to put Yirmiyahu in a therapeutic daycare. I laughed and told her we were. It was so nice to meet another mother in such a similar situation! It’s really different from the experience of mothers who live in the center of the country.
And it was also very nice to be in a room with about ten other babies with T21. Except for my interview at Shalva five weeks ago when I saw three other babies, I’ve never seen babies with T21. It’s nice to be in a place where my baby is just one of the crowd. I do feel a little self-conscious that so many parents commented about him not looking look like he has T21. He does, just his features aren’t as strong as what is typically seen. I’m not self-conscious about Yirmiyahu, but I don’t want to be the cause of any other mother comparing her baby in a less favorable light to mine. One mother even asked me if he has Down syndrome! Keep in mind that every single baby in the room has T21 because that’s what this group is for. So I told her, of course he does! She asked if I was sure, and I told her that we did genetic testing and he unquestionably has the common form of T21 (ie not mosaic Down syndrome). She still asked me if I was sure the tests were accurate – she told me he just doesn’t look like it.
As much as I appreciate this framework, I realized that I’m going to have to be careful not to compare his development to any of the other babies there. It’s natural with so many babies close in age all in one room on a regular basis for mothers to take note of what each is doing, but I don’t want to. Yirmiyahu is who he is, and just like I don’t compare him to anyone else in other frameworks, I don’t want to compare him to anyone in this setting. I’m looking forward to getting to know the other mothers during our sessions.
Something else I really appreciated was speaking to the therapists. The physical therapist has a very similar way of looking at development as me, and that’s nice because I’ve already said that I have differences of opinion in how I view things and what his regular physical therapist wants to do. It’s nice to have a professional with 30 years of experience agreeing that what I feel is primary is very important. I’m looking forward to implementing the suggestions that were made today.
So that’s the update on the last couple of days!