We spent the day down in Minneapolis today, another appointment. Toma does need glasses. Now picture this people....Toma in glasses....HE ONLY HAS ONE EAR!...
So we are off to find 'specialty' glasses that will some how fit him. I assume a band of some sort is a definite, and boy is he going to hate it! I really can NOT see him keeping them on.
In the morning we have to leave early for more appointments in St. Paul and then over to Minneapolis for more there too. I don't like it, and will be SO glad when the majority of them are all done. He totally hates going, and cries and cries when we turn into the parking ramp. The entire time he cries and gets so hot and sweaty. On top of it he has a cold right now and feels lousy, so being that he has no palate, the 'ooz' just comes out everywhere, his nose, his mouth, mixed with tears....yes, a mess I tell you.
Today was opthomology, tomorrow is Ear, Nose and Thr0at, and gastroentrology. Thursday is pediatrician to get ready for sedated MRI and ultrasound on Friday, with additional checks from the Opthomologist and Audio people.
I just like staying home....did I mention that?! My son Shane has to take off work and bring us to these because I cannot drive in the city! I have to bring Toma's baby cereal because he still won't eat regular food. Or drink. Anything. So he doesn't feel so good by the time we get home.
It's also difficult to communicate because he doesn't speak at all, and I don't know what if anything he understands. I sure felt sorry for him today. And I imagine tomorrow will be more of the same. And the next day. And the day after that.
Then we have a bit of a break and they start up again in July.
So there's my whining for the day. I'm tired and just want to go to bed. I have no news to report about the little boy we want to bring home other than he was transferred to an institution and is probably scared and confused.....and we still can't come up with the money. The good news is that I'm told he CAN still be adopted from this institution.
Why does life seem so complicated?
I'm off to give the kiddo's a bath and hopefully get some reading in tonight :)
some days you want pecans, some days you want walnuts...and some days you just get stuck with peanuts.
I don't know if I introduced myself. My name is Leah, and I live in Eagan. I'm also a RR parent, working on an EE adoption. I also have a daughter with Down syndrome and spent many years living in all of the specialist's office you're now dealing with. If you need any help getting around LET ME KNOW!!! I can sure help you! I can also recommend who's good in the area, and who tends to get parents ticked off! I'm also a sign language interpreter, and worked for a long time with kids who were hearing but had minimal language skills and needed some form of manual communication system. And...taking care of hearing aids. (my daughter wears aids as well.) Has anyone mentioned getting a bone conduction aid for Toma? I'm assuming since he has no canal he's lacking some hearing on that side! As far as glasses, there is a type of glasses that have a tiny magnet that is implanted just under the skin so the glasses stick to the magnet, similar to the way a cochlear implant sticks on the head.
ReplyDeleteI'm sorry Jodi. What a hard time. I can somewhat relate to all of those specialty appointments, but you are cramming them in all together, becasue you have to, and how hard is that!?!? You will get a break. Just remember you are doing what is best for Artoma.
ReplyDeleteBlessings to you.
Did you like that crowd at TGIF's?? Wow!!
Oh, by the way, you need to get Miralex glasses. That is what Ricky wears, as well as a lot of kids I see at the eye doctors. Thay are great...I'm guessing even with one ear!!
ReplyDeleteNo fun. No fun at all for either of you. I'm guessing we'll be doing the "rounds" once we get home too. I don't think Nadia's hearing is very good right now and I'm hoping it's just a fluid issue resolved with tubes. I'm already looking up Josi's ENT's phone number to have it ready when we get home. Tomorrow may be our last day in Zap--we hope!!!
ReplyDeletePraying you'll get throught these dr. appts. quickly and with some good answers and resolutions to Toma's issues!
Oh the poor lil muffin, that stinks that he has to go to so many appointments and that they scare him. Hopefully though getting them all out of the way now will help him with speech and you guys can begin to communicate soon.
ReplyDeleteThanks for your suggestions guys! And nice to 'meet' you Leah. So far, they haven't gotten the response from his good ear that they were hoping for, but we have an appointment at the Lions clinic at the U of M. Hopefully we can quickly get it up to where it should be, since he probably doesn't have any hearing on the other side.
ReplyDeleteI'm still waiting on the information on the glasses, seeing if our local eye place can accomodate him or else we'll go to Minneapolis for that too.
So far, I'm just going where I have the referrals...but after the first, initial rounds, perhaps I can be a little more choosy and I'll be sure to ask for some good tips on the doctors :) Thanks so much for your advice!