Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Archive for the category “therapy”

I just wanna be there when you’re all alone, thinking about our better days when you had it in your bones

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(DISCLAIMER: any products linked in this blog post were purchased by Dec and myself to make our lives easier and I don’t get any money from the companies for pimping them out.)

It’s amazing how quickly life has gone back to “normal”, albeit a “new normal” with Sarah home. We spent our first two days at home, but by Saturday, we were ready to get on with the rest of our lives and decided to go out for some shopping and dinner. Sarah was armed with an adorable hat that combines both a giant flower and a sassy print (my two favorite things for my little lady), a very stylish pediatric mask courtesy of the grandmas and a stroller sign from Kind Signs and she did great! While I’m sure that there were some people who think we’re overly cautious new parents, I know that it’s the best and safest way to bring Sarah out in public.

I don’t want life to stop because of cancer. It did stop, for the three and a half months Sarah was in inpatient treatment and I don’t want it to be stopped for the next three years. I want her to be able to go out and experience life in this beautiful city and I want her to be happy and feel “normal”, especially as she gets older and realizes that he life is different from other kids.

Her first round of maintenance chemo is coming up tomorrow. I’m not sure what the protocol looks like for that, I know that we’re supposed to go to the clinic at 8:30 am (ughhhhhhh) and I’m sure the lovely nurses there will give us the rundown.

Sarah is back in regular therapy now–feeding, speech, and physical. She’s LOVING speech and the ST is very impressed with her progress in that area. She’s testing at about 9 months for speech which is great! I don’t want to talk about her PT testing…too fucking depressing. Suffice it to say that it’s very behind. Feeding therapy is also kind of a bust, but the therapist is an absolute joy to work with. She’s very laid back and easygoing and says that most if not all cancer kids–chromosomally enhanced or not–have difficulties with eating and with food even after treatment is finished because they’re either scared to eat because of vomiting or simply not hungry/nothing appeals to them. She and Sarah did some fun mouthing exercises and Sarah took a tiny bit of juice by mouth. Baby steps, right?

I’m starting to feel slightly more like a Down Syndrome parent again than a cancer parent. There’s still so much that’s different, but I feel a lot more relaxed and like I’m focusing on Down Syndrome and cancer in equal measures. Cancer is going to be very consuming for the next seven years of our lives but I don’t want to be obsessed with it the way I was. I finally worked up the courage to get in touch with the social worker for therapy and I feel like that’s helping a lot. I should have done that when Sarah was first diagnosed instead of trying to handle it on my own. Maybe then there wouldn’t have been so much to fix.

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Sarah at (almost) 15 months

Sarah will be 15 months old on Friday! We’ve officially been out of the hospital since this morning and we start the maintenance phase (which includes outpatient chemotherapy, regular blood checks, and anything else that needs done) of her chemotherapy next week. Fun…but at least she’s home!

Due to her hospitalization (having spent 92 of the past 101 days in the hospital) and the things that accompany her illness, her development has basically stalled, and even started to regress in some areas, but we’ve seen surprising progress in other areas.

Physically she’s come to almost a complete stop from where she was pre-hospital. She’s no longer rolling or “scooting” like I reported in her first birthday post–I think because these skills went into disuse she has just forgotten them. We’re going to resume some PT (nothing serious, just low-key, 2x/week) in hopes of getting those skills back. She does sit up like a pro though! She’s reaching for and grabbing objects, and she likes to “study” them up close and go “oooooh!”

She recognizes about 25-30 signs. She signs consistently “mom” and “dad” (I’m mom, Dec is dad…thanks a lot you little shit!), “happy” and “cry”. she periodically signs “please” and “all done”. She’s getting very good at copying and probably copies about 90% of the time when we sign to her. She also responds by very enthusiastically nodding her head or very emphatically shaking it, which is funny.

She DOES speak a tiny tiny bit now! Her first word was “dad” and she will say it periodically if frantically signing “dad” does not magically manifest Dec in front of her. Her ST (one of the only ones we didn’t cut during her time in the hospital) says that she babbles very purposefully and that her formation of sounds is great. She’s a mimic in terms of sounds as well as signs and if you babble at her she’ll repeat it back. We’re thinking more words soon!

She came home on her NG tube. She’s still not particularly interested in eating by mouth and turns her head away or signs “cry” 😦 She has lost 4 pounds since starting treatment and is currently clocking in at 12 pounds 6 oz. We’re hoping that as her treatment dosages are lowered she’s showing more interest in eating and less interest in throwing up and we’ll see some weight gain. She looks like she’s wasting away and it’s so sad.

She’s completely bald and it’s super cute. I put a lot of horrifically ugly giant bow headbands on her head, because I can. Dec thinks that she needs these.

Despite what she HAS lost–weight, skills, her ability or desire to stomach solid food–she has gained some skills and some new friends on the oncology ward, and most importantly, she has not LOST her will to fight, her spunky personality, or the love she has for us. She’s the biggest joy of our life, and we’re so happy that she’s fighting and getting better and home with us. We can’t wait to see how she grows in the months to come!

31 for 21 #7: Can I cheat on this? (and Sarah’s EI today!)

I still suck at this. It’s going to be more like 15 for 21 at this rate. I think I’m going to try to go for 21 for 21 and call it even.

So, at Sarah’s EI appointment today I got referrals to doctors in NY, so I’ll be making some phone calls in the next couple of days. I’m also trying a new naturopathic/neurodevelopmental approach thanks to this wonderful group on BBC (can we talk about how much BBC has helped me in the last 4 months or so? Because it has. I love BBC), with Dec’s blessing, so that should be interesting. I guess what I’ll have to do is try to figure out a schedule of therapy and natural/neurodevelopmental approach that suits us best.

Sarah’s EI went swimmingly for other reasons (does anybody even say ‘went swimmingly’ anymore? whatever, it’s hip to be anachronistic)–they told me she is doing GREAT. We only see the EI once per month, but she is right on track to where she should be and even ahead in some respects. That makes me feel good as a parent; I’ve tried so hard to be the best parent I possibly can be for Sarah and it’s showing!

One of the most exciting things about NY is that I am hoping that Dec will be able to be at more of her appointments. He is hoping that in his new position he will have more flexibility to take the time out of his workday to attend at least some of them. It would be great to show him what’s going on with her in that respect!

I have yet to break the news to her mama. She knew we were considering it, but we haven’t told her officially yet. I know there won’t be any problems there–she has limited contact with her and it’s perfectly legal for us to take Sarah out of the state, but it’s still going to be hard to tell her that the option for her to just come over should it finally seem appropriate is going to be eliminated. I guess that is something that will have to wait and see.

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