Felipe has started at the gym-center based services this Wednesday 4/23. The location is fairly close by mass transit and/or by car. I was kind of tempted to walk over, might be good exercise for mom but baby would fall asleep and the last thing I needed was a sleepy baby before physical therapy. As usual he get there, smiled and waved and screamed. Its weird to be in a smaller setting, I feel like I wish I could continue at Hospital for Special Surgery where they have more equipment and things seem brighter, more child friendly and more empowering of parents. My first impression of this place was that they just took the kid and left. I was not having that, I want to see the exercises, stretches and what he is doing so i can replicate at home or at the very least, if I'm asked about it I know what is going on. I hope that things work out, I am not going to let me nervousness about if I made the right decision to cloud or merk the sessions, I'm going to remain neutral and just observe if this place is best for Felipe.
I FINALLY signed up Felipe to the YMCA. We took him for his first swim on Tuesday. I'm trying to enroll him in swimming classes that begin next week. The only thing I find near to impossible is changing him in and out of the swimming stuff. He gets showered, remove the chlorine, I remove the swimming diaper, put on fresh clothing. And then what about MAMI?! How do I change with Felipe in the changing room. Its not an issue of modesty, there is no space to put the baby down for a minute while I shower. I am doing to have to do some figuring out, maybe bring the stroller into the shower area so I can rinse off the chlorine and not have itchy skin. At the very least, I can dry off and change without fear he will crawl away. The ideal is to go with someone.
Felipe's braces are in! yea, we are going tomorrow to pick them up and make any last modifications. Also going to HSS for last therapy session that is covered by the insurance. From here on in, it will just be Early intervention at home and in the gym.
I've called the neurologist several times with no results, I'm going to step up my level of harassment/stalking. The PT wanted me to see if EMG would be a good test to do for Felipe. I don't really know what EMG is, except that it measures nerve damage and response times. PT seems to notice that one leg isn't as response as the other. Its been continuous and she wants to determine if there is nerve damage how to better address the issue. PT said she might leave in September which I'm sad about, she is great. What ever she doesn't know she researches articles. Whatever questions I have she is really insightful and full of encouragement. I hope we can continue to use her for as long as it takes!!!
Today was Access A Ride assessment interview. AAR would make traveling to doctor appointments much easier. I can get to Manhattan without having to walk 1.2 miles to coney island station or fighting w the bus driver to let me on. Felipe wasn't very happy with the interview. The rooms were as small as a bathroom stall.
Now that I've tackled the small thing like AAR, next thing, the SSI application. And also speaking with the Spinal Bifia organization about resources and other locations for additional help for Felipe. YMCA is costly but really hopeful that swimming with help with Tone. Hopefully with SSI approval or with SBA, I can get a discount and the swimming classes wouldn't be a financial hardship.
On that note, I have decided to leave my position at work and stay at home full time. The babysitter candidates were getting more and more expensive. The money I make would go directly to them and then I would be in debt with student loans. It was a very difficult decision but ultimately, I do not want to have any regrets about if I did everything possible to ensure that Felipe walks and thrives. I rather regret leaving the job of my dream. And in the end God has a plan for me and I have to trust that he will find a way to get me back to my job or find me another better position for me once Felipe has fully recovered.
Hugs from this official, stay at home mom. I'm not sure how I feel about the title "Stay at home mom" for one, I am never home. I'm either running errands, taking Felipe to appointments, on phone scheduling appointments,etc. smh.
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