Vada's Victories

05/07/2018

I know I have been inactive on this page for a quite a while, but I wanted to take some time to update everyone on how Vada has been doing. I’m happy to say that Vada hasn’t been hospitalized at all since February 2017! That’s a huge accomplishment for her. She’s been sick a few times, but nothing too serious. From a medical standpoint, she has been doing great. She is still on oxygen at night, but her heart and lungs look great. We will try again sometime this summer to get her off oxygen at night, so hopefully that will go well. She recently saw her opthamologist and he said her eyes look good and she doesn’t need glasses as of right now. We’ve also seen audiology again and they did a few different hearing tests on her and got good responses for normal frequency sounds. She is having some trouble with high and low frequencies, so we are going back for additional testing in July. They don’t think we need to worry about hearing aids right now, because it could do more bad than good for her hearing since she’s responding so well with normal frequencies. We also saw neurosurgery awhile back and she had an MRI done and everything looked great and her shunt for the hydrocephalus is working perfectly! She’s had the same shunt for five years which is really good. She’s doing great developmentally and doing great with standing and walking. She does still need help, but I feel confident that we will get there one day. It’s all up to Vada and sometimes she can be a little stubborn😂😂😂. She’s still getting all of her therapy and her therapists just adore her and we love them as well for all they have done to help her and give her the best quality of life. Her teacher who comes a few times a week is great with her and we’ve even gotten approval from her lung doctor to try* and see how she does with going to school a few hours for 3 days a week in the fall. She loves being around other kids, so I’m excited to see how she does with that. Of course, during cold and flu season she will go back to home visits with the teacher, but I think going to school and being around the other kids will be good for her. Overall, Vada is great and is just the happiest child and she brings so much joy to everyone. We love her to pieces and God Bless all of you for continuing to keep her in your thoughts and prayers.

08/10/2017

Ok so I know I haven't updated about Vada and how she is doing medically all year long(WARNING: LONG POST). I feel terrible about not keeping everyone updated, so I'll try to do better. Vada has only had one hospital stay this year🙌🏻 and that was way back in February and we were only there a few days. She's been sick a few times, but nothing major. We are in the process right now of trying to get her off oxygen at night and she's doing well with that. Her heart and lungs both look good and are better than ever. She just had an MRI last week and everything with the hydrocephalus and her shunt looks fine. She has had the same shunt for almost 4.5 years which is a major accomplishment and a very big deal! She's still not walking or eating much by mouth, but she is doing great with standing and walking in her gate trainer. She does still need a good bit of help walking with the gate trainer, but overall her therapies are going great. Also, she lost her first tooth this summer! It was loose so I made an appointment with her dentist, but she lost it at home before the appointment. I'm pretty sure she swallowed it because she woke up one morning and I checked it and it was gone. I looked all in the bed and in the floor, but we never found the tooth. She turned 5 in April and while she won't be attending school this fall because she is still too medically fragile, she will be receiveing some homebound teaching a few days a week. Her doctors feel this is the best option for her right now since she was sick so much in 2016. I hope that fills everyone in on how she's doing. She's had a much better 2017 and she's as happy as a clam most of time 😀.

12/27/2016

Please keep Vada in your thoughts and prayers this morning. She has been having some gastrointestinal issues for almost a month and she is having a procedure done to try and figure out what is wrong. She's already had some tests done and she was negative for 22 different pathogens(like E. Coli and Salmonella), so this procedure is the next step to getting some answers. She's had a rough time and we are just really ready to know what is wrong, so we can get back to our (somewhat) normal life.

11/29/2016

Sorry I haven't posted and updated about Vada in a few weeks. My phone went for a swim, so I haven't had a phone for a while. Vada had gastroenteritis(stomach flu) a few weeks ago and stayed at Batson for 5 days or so. Well, she had a rough weekend so I took her to her pediatrician yesterday. The chest x-ray looked bad and they were pretty sure it was pneumonia and recommended I head to Jackson, so here we are. She was requiring a good bit of oxygen, but they have been able to wean some today so hopefully this will be a short stay. Vada has had a really tough year. She's had 6 hospital stays and it's hard on our family when this happens over and over. To say that we are ready to say goodbye to 2016 is an understatement! We are hoping for a happier and healthier Vada in 2017.

11/16/2016

Vada was admitted to Batson last night. She has been having some tummy issues for the last few days, and I just couldn't get her well on my own. She wasn't tolerating her Pediasure and she was barely tolerating small amounts of Pedialyte. She had a rough night(lots of gagging and wretching because she can't throw up), but she seems to be feeling better this morning since getting some IV fluids in her. The doctors have ruled out any respiratory issues and are thinking she just has a nasty virus. I think they are going to try and give her some milk today, but not sure how it will go. Hoping our stay is short and we can get back home soon.

11/05/2016

I have some big news! We went to see the genetics doctors yesterday and have an official diagnosis and named syndrome for Vada. Beaulieu-Boycott-Innes Syndrome. It's very rare. She is only 1 of 8 people in the world who has it, and she is the only person in the United States with the syndrome. James and I are both carriers for the gene that caused this, but it is a recessive gene so it didn't show up in us. However, the combination of this certain mutated gene between both James and me is what caused Vada to be the way she is. In fact, if we had another child, they would have a 1 in 4 chance of being the same way as Vada. Some characteristics of the syndrome are severe intellectual disability, global developmental delay (especially in speech and language), and dysmorphic facial features(like Vada's deep set eyes, small chin, and flattened face). It feels good to know because of course I want to find out more about it so I can get her all the help and resources she needs and deserves. It wouldn't have mattered if we had never found out anything, because she is adorable and we lover her just the way she is!

09/23/2016

I meant to post this last night but we came home yesterday afternoon. Vada is fine, but seems very confused and I think it's because she might be seeing double. I'm having to put an ointment in her eyes 4 times a day, and that's really the worst part of it. She doesn't seem to be in any pain and the redness will go away in a few weeks and the crosseyes should balance out soon. Hoping for a speedy recovery, but overall she seems fine.

09/21/2016

Vada is out of surgery and resting. She's very mad at me right now LOL. As expected, she was very difficult to entubate(45 minutes and 7 tries!!!!!) and we will be staying the night for observation. Thanks for the prayers...it's been a very long day. Vada has had many surgeries, but the surgery process from start to finish today took longer that it ever has. We are in a room now and I'm hoping for a restful night because she seems very confused when she opens her eyes.

09/21/2016

Pre-surgery before she's gotten really hungry! Praying for an easy surgery with no complications.

09/14/2016

So I've been meaning to post for quite a while, but our life is just so busy right now. Vada has had a great summer and we've had lots of appointments with all good reports. She did get sick with a cold a few weeks ago, but she managed to get over it at home (with the help of shots from her ped, steroids, and multiple daily breathing treatments). In the last couple of months she has been to see her neurosurgeon, cardiologist, pulmonologist, audiologist, ophthalmologist, and her g-tube doctor. She's gotten great reports from everyone, but she is having surgery next week to straighten the muscles in her eyes. She also needs glasses, but her doctor sees no point in that now because he thinks she will just pull them off like she does her hearing aid. While this surgery next week is an outpatient surgery, I'm still nervous as always because she has to have a breathing tube placed during the surgery. Also, she *may stay one night just for observation because of her medical history. That's just going to depend on how surgery and the post-op goes. I was told that she would have bloodshot looking eyes for up to 2 weeks, so no one call DHS on me 😂😂😂😂 it's just from the surgery! We have a busy Fall ahead, with 3 appointments the week after surgery. One of those appointments is a pre-op for the pediatric dentist so she can get her teeth cleaned. Because she has an oral aversion, she just can't go to a regular dentist and will have to be put to sleep. I'm interested to see what they have to say about her teeth because they are pretty messed up because of the cleft palate and other birth defects. I'll try to update as best as I can next week for her surgery and as always we would appreciate any good thoughts and prayers.

08/24/2016

08/10/2016

Bored waiting for Vada's MRI to begin...she is throughly entertained by my chair spinning. That laugh of hers is everything. I know I haven't posted in quite a while, but Vada has been fabulous this summer and is the happiest kid ever. She has had lots of appointments in the last month so I'll try to do another post sometime this week with details.