Avery’s appointment with the Neurosurgeon

Great news to report….We finally went to see the neurosurgeon for Avery’s neck for AAI. He told me that her gap is around 4mm and that is in the normal range so it turns out she is pretty much in the clear and she don’t have AAI. He said he would clear her to jump on trampoline, tumbling, pretty much anything. He did say we could do the x-rays for a couple of years if we wanted to, to watch to see if the gap grew bigger or changed or anything..but we will see I guess..It just shows that u need to see the right specialist bc her regular dr had told me that it was abnormal and so on…and he apparently had no idea what to look for.
Now for her back…remember I was telling u there was a bump on her lower part of her back next to her spine..well the neurosurgeon is referring us to an pediatric orthopedic dr now. When we first started talking about her back he said that her top part of her back has a slight curve but it was nothing to be worried about or concerned..just kind of watch it and if it got bad then we would need to go to the orthopedic..well then I asked him to look at her lower back and he pretty much just told me that we would need to get hooked up with orthopedic. But he thought it was bc her spine curved..I said are u sure that is all it is and he thought it was but I'm not sure I believe him or not..so we will see..
We are also going to go to see the orthopedic for her hips.I asked the neurosurgeon about it and he said that we needed to see an orthopedic for it. Avery has a loud clunk in her hips. She is CONSTANTLY putting her hip out and in and it is actually called Hip Subluxation. We could be just sitting in the rocking chair reading a book and she will pop her hip in and out over and over. The therapists wont even do joint compression on her hips anymore bc of it. Actually they are the ones that told me that I should get it looked at. I kind of just got used to it..but every time she does it it still makes me cringe and I tell her to stop. I guess every time she does that she is wearing the bone done and making everything looser. So it just gets easier and easier as time goes on I guess..The only time her hip is probably in is when she is walking. So I'm really curious to see what he has to say about it.


Avery with pumpkin. He was in the waiting room while we were waiting. He entertained Avery during our long wait. He is a therapy dog. There was a girl there that is in the middle of cancer and that dog aka pumpkin goes everywhere with her. He has his own hospital badge with his picture on it. Last week he spent the week in the hospital on the cancer floor with her. Everyone just loves him. Even when the dr came in to see Avery he asked her did u get a chance to see pumpkin?? lol!!  HE is highly trained, bc he liked to show off on what he could do. The girls dad let Avery feed him a treat and then a little bit later Avery signed more and held her hand out…She wanted to keep feeding him some treats..and pumpkin sure didn’t mind!! HA!  But I couldn’t help notice the binder sitting on her moms lap. It had said on the cover Julia’s medical history and that binder was FULL of paperwork. It.broke.my.heart. That girl has gone through more then I can imagine in her short time here on earth and she probably has a long road ahead of her. We see a lot of drs. and it seems like we have a lot of medical problems but let me tell you we don’t have hardly anything compared to what that girl is going through. So I will take all my doctors appointments and be quiet about it. I pray for God’s healing on that sweet girl and praying that the parents can get some rest bc u could just see there tiredness on them.

31 for 21: Day 28 Dr updates

This month has been crazy with dr appointments bc once again its that time again to go see the dr.s for updates mostly….
Sleep Check up: First up is her sleep dr and her sleep apnea…How is she doing?? The most common question I get from everyone…well we went for a check in basically and she is getting smarter and apparently she is taking it off pretty much right after we put her to bed..her I thought she was getting better and leaving it on longer each night but I guess she had me fooled!!!;) We did get a new mask that we are going to try..that is one of our biggest battles is finding the correct mask that fits her correctly..I don’t know if we will ever get there where she will leave it on all night but we will keep trying…usually when I go to bed I put her mask back on just to make me feel like im trying:) 

ENT check up: She has not had one ear infection since we had tubes put it in..the best thing we could of done..and it has been over three years and they are just now falling out!! One of her tubes fell out on her own and the other one was stuck in her ear canal so the dr just pulled it out.She didn’t even flinch...I couldn’t believe how tiny it was..they are smaller then a pea.. HE said that we just need to come back on a as needed basis…wooohoo!!!  Hopefully we don’t have ear infections again though since the tubes aren't in there..but he did say that her ear canals are bigger then what they were so that’s good…
Dentist check up: Everything was great!!!  That is always good:)
Eye Check up: He still doesn’t want to do anything about her one eye yet…which makes me a little uneasy but I guess we just wait bc everyone tells me that he is good and knows what he is doing and he is the only pediatric eye dr in the area..my concerns are that her one eye wanders in and I am seeing it a lot more..just not when she is tired anymore..she also tips her head side ways…ill just keep watching it…
Her neck: We were suppose to go to the neurosurgeon today but he had to have surgery so we will be going on the tenth of November..
Special Needs Dr/nutritionist: She is doing great…she really watches her weight and to keep her in check so she don’t get to heavy!! Everything she eats gets put under the microscope!!! Which in the end is good!! She also said that we can let her drink from an open cup without having to redo a swallow study bc I don’t hear her coughing when she drinks..she mainly drinks from a straw but she does do an open cup now and no more sippy cup!!! 
One other thing we are checking out is that she has a weird little bump next to her spine on her lower back..I don’t think it is anything major according to the one dr but she said that we need to go to her regular dr and then he can order back x-rays so we can just make sure…so I am waiting for the dr to call me this morning..we will see …let you all know when I know what it is!!!  At first I thought it was just a bruise but it has been there for months now and it seems like it is getting bigger.
Well that pretty much sums it all up…ha!! 

31 for 21: Day 13 Atlantoaxial Instability

Last week Avery went to get her x-rays done on her neck to rule out Atlantoaxial Instability{AAI}. AAI is a separation between the vertebrae of the spine. AAI occurs between the C1 and C2 vertebrae. A normal separation would be under 5mm. I didn’t ask what her separation was..didn’t know sorry!!  But I will ask the other dr when we go. AAI occurs in about 10% of children with down syndrome and between the ages of 3-5 is when it is recommended to get a x-ray to rule it out. Well the nurse called me back today to let me know that Avery's x-rays were abnormal and that the dr couldn’t sign off on them. So he is referring us to the neurosurgeon where she said they will probably do further testing like a MRI. So I really don’t know anymore right now besides that. As soon as I hear something I will let you all know!
I was going to do a write up on it but I found this great write up on another blog that a mom wrote about bc her daughter had it too but hers was pretty serious. I'm praying that Avery’s isn't that bad. If you could please say an extra prayer for Avery!! Please go read the article so you all will know what I am talking about..
http://www.myspecialks.com/2011/08/down-syndrome-and-aaiaoi-and-aap.html