This is Hard

Day 2 was just as difficult as day 1.  Keelie was asked to do some specific tasks today and she just completely left the room mentally. Ugh....she can be so stubborn. She would not cooperate yesterday unless I was in the room with her and today was the same. This delays everything because I could be answering questionnaires to move her along.  What should have taken 45 minutes took 2 hours today and yesterday we didn't finish until 6:30 and could have finished early afternoon.  She's really testing my patience. Which I don't have....  Tomorrow is speech and will be aggressive so she went to bed at 8:00.  I'm hoping for a good nights rest and a great day tomorrow.  We will also get lots of information on her progress in the exit interview. Thanks for following the blog. Please pray for us as we continue. 

Back in Kentucky

We are back in Kentucky for 3 days of testing. Today was day 1 and boy was it long. Keelie and I got there at 9:00 am and we didn't finish until 6:30 pm.  Boy were we tired. She did great.  She did lots of cognitive testing and was very uncooperative at first.  So after several attempts to get her doing what she was supposed to they let me sit in the room with her.  She showed out then. I got interviewed twice as well so it's been a crazy but worth it day.  We will return in the morning. If Keelie will cooperate we won't be there as long.  I will continue to update as I can.  Thanks for following the post.

Busy times

So we've been really busy with appointments lately. It's hard to stop and think these days. Our first appointment was with Keelie's eye doctor. She is now wearing glasses. Her eyes were starting to cross pretty bad so I thought we better follow up with her doctor. Keelie is significantly far sighted. Her lens strength is +3.25. The second appointment was with her neurologist. We see her every 6 months. This time we talked a lot about Keelie's nutrition. This led to a referral with a pediatric GI doctor. We then went to Kentucky for 4 days. We got a lot of information about some education criteria for Keelie. We also learned some new things but overall the trip was very informative. We were able to play a little while we were there. We returned on a Sunday and left on Thursday for a follow up with the eye doctor Friday. Then turned around and went back one more time for the GI doctor.

So this is where we are now. Keelie still has significant eating issues. The doctor believes she has secondary reflux and that the motility of her intestines is weak and slow due to her hypotonia. In other words, her stomach is not emptying. So this Monday the 29th Keelie will have a gastric emptying test and the 30th she will do a swallow study. Please say a prayer she cooperates and EATS.... She needs to eat for these test to work.

As far as the glasses go, well that was an adventure. LOL.... We finally found some glasses and frames that stayed on her face and that she will keep on. When we followed up the dr wasn't pleased with her progress and talked of increasing the strength. But she wants to give her 2 more months to see if her eye crossing improves. The switching of glasses may be why she still crosses because of not wearing the glasses like she was suppose to.

Keelie also got some new SMO's (braces for her feet). Remember the drama I went through with the first braces. Well this was much better, except the first pair was too small. So they retook measurements and ordered some more.

Keelie still continues her therapies and school at TK Martin. She has improved and is such a sweet child. We thank God every day for giving her to us. She is such a blessing.

Thanks friends for following the blog and praying for Keelie and our family. We love you all.

Appointments ahead

So the last few weeks have been really hectic.  Keelie went through several days of not eating and pocketing her food to the point of gagging and throwing up.  I am now believing she had the stomach virus.  She only got sick twice but she didn't eat for several days.  So I'm guessing she had an empty stomach.  And....the other 2 kids got the stomach virus 3 days after Keelie got sick.  She is better now and is eating a little better.  Yes she still puts food in her cheeks and spits out quite a bit but at least she is trying.  And you have to realize she can't really spit so the food has to fall out or I have to dig it out.  Yuck I know, but her mouth isn't strong enough for spitting.

Tomorrow we will be traveling to Jackson to see Dr. Omar, a geneticist.  He's actually seeing Ryland.  We decided to just go ahead and have him tested since he's so far behind in his speech.  Thankfully he's picked up a few new words lately.  I am encouraged.  Keelie will be going as well.  I want the doctor to put his eyes on her instead of me trying to tell him about her disorder.  This way he can see her and generate his own opinion about her disabilities.

Then next week we will be traveling to Memphis to see Dr. Hoehn.  Keelie's eyes have been crossing so we need a good check up.  Many kids with her disorder have issues with their eyes but if we get a head start on it then it won't be as bad as she gets older.

Then the week after that(Feb 27th) she will get her new braces.  We hope.  As long as they fit well.  We return to Memphis March 8th for a neurological appointment with Dr. McVicar.  And lastly, we travel to Kentucky April 4th for an assessment with the research group.  Whew....I'm tired.  LOL

Remember Keelie is 1 of 50 in the US and 1 of 150 in the world with her disorder.  I ask all my followers/readers to pray for us in the upcoming appointments because not many of these doctors know or understand Keelie's disorder.  So it's me educating them.  It can be frustrating at times.  I have all my information ready to present and I am prepared but sometimes new doctors don't appreciate me telling them about my child's problems.

I'm leaving you with a few pictures from the rodeo this past weekend.  Thanks to all of you who follow our journey.  We appreciate each and every one of you.

     

"Unglued"

If you have read the series "Unglued" by Lysa Terkeurst you can completely relate to the many moments of becoming unglued I am having lately.  Keelie's eating has been a big struggle for her lately.  She really only has one, no two, foods in her diet.  Chicken and French fries.  And not just any chicken and french fries.  It has to be from Wendy's, Chick Fil A, frozen Tyson nuggets, even popcorn chicken from Walmart.  Now....those of you who know me, know I don't like fast food or frozen chicken nuggets...gross.  BUT, if that's all I can get her to eat I guess something is better than nothing.  So how do I get this child to eat?  Her Daddy cooked homemade oven fried chicken and oven fried fries for supper tonight.  She wouldn't eat.  She did finally eat a bite but had to spit it out.  She pocketed it right to her cheek.  She spit it out and we tried again.  This time the results weren't so good.  She gagged until she threw up.  TWICE....a great ending to a lovely meal.  At least I hope it was from gagging and not stomach virus.  I guess time will tell.  Today she ate a few Cheerios, drank a glass of milk, had a Capri sun, ate a small bite of turkey sandwich meat and cheese but then had to spit.  That's all she's had all day.  And this is a typical day lately.

My next struggle is potty training.  I wish I knew if Keelie knew when she needs to go or not.  She should be potty trained but she's not close.  Others with her disorder do have bathroom issues.  I just don't know yet but gosh I sure wish I did.  It would be so nice to have her out of diapers.  I've been told she may not feel the sensory of needing to go until its too late.

So back to my unglued comment.  I tend to want to come unglued with Keelie on many occasions throughout the day, but I know it's not the best thing for me to do.  I do become emotionally, physically, even spiritually tired, but in the end I hope I am doing my best to nurture her and help her grow in the right direction.  It is challenging.  Now I can promise you Keelie does get disciplined and treated just like her sister and brother.  I feel it's best for her, but sometimes it backfires....lol.  Keelie's feelings get hurt really bad and really easily and when this happens she shuts down.  So one can forget about getting her to do anything until she perks back up.  So if it happens during a meal, well it's bad news.  She doesn't eat.

So that's all I will discuss tonight.  I hope you all have a wonderful Friday and weekend.  Thanks for following the blog.

Updates

Yes, I know it's been a long time since I've updated.  I'll try to keep it short and sweet.  Keelie has been doing really well.  She's putting 3-4 words together now.  Which is huge for her.  I love seeing her progress and its so much fun having a mini conversation with her.  She's so expressive.  It's just darn cute.  Lol.

She is still pretty weak.  She continues her occupational therapy and physical therapy.  Both are helping but there are still many things she can't do that she should be able to do at her age.  For instance, in PT she can't jump like a typical 3 1/2 year old.  In OT she still uses all her fingers to hold a pen, pencil, fork, etc.  she also hasn't really favored a side.  So we don't know if she is going to be right handed or left handed.  She has new braces coming in January 30th.  Her other braces are almost too small.  Her balance improves so much with her braces.

February 21st we go to her eye doctor.  Her right eye is not always tracking with her left eye.  Sometimes she will look a little cross eyed.  Hopefully it will be an eye muscle issue since she has hypotonia and nothing else.

Keelie had an EEG last October.  She was a trooper during the test.  Unfortunately her seizures have not gotten any better.  In fact, she said Keelie was having significant spikes in her occipital lobe.  We talked about Keelie's staring episodes.  I always referred to these as shut downs and never thought anything about it.  I would assume her feelings were hurt or she was just having a "girl" moment.  I was wrong.  These are mini seizures.  So the sad part to he story, an increase in medicine.  Boooooo.

Keelie did get the flu.  Fortunately, we were able to stay out of the hospital and treat her at home.

I helped teach  Keelie's class at church this morning.  Wow.....it's really an eye opener when I'm around other kids her age.  They are so much more advanced than her.  It really breaks my heart.  She talked a little, but not much.  There's one little boy in there who was born on the same day as her.  He seemed 2 years older than her.  These kids are also potty trained.  I don't worry about Keelie being behind near as much as I worry about other kids making fun of her.  It breaks my heart to think kids will mock her speech or laugh at her due to her inabilities.  I know kids don't understand her but it would be so much better if parents could explain to their kids that Keelie or any other child with a disability was born that way and they can't help it.  It would be great to have kids who accept her for who she is because she is a beautiful, fun, loving little girl.

I'll try real hard to update more often.  Please pray for Keelie and for us.  It takes a lot of patience for all of us.

I'm Back

Well, it has been a long while since I blogged so I don't even know where to begin.  I think I will start with braces.  We finally got the braces and they are wonderful.  Keelie started out wearing them 15 minutes a day and slowly worked her way up.  She is now wearing them 2 hours a day.  They make a huge difference in her balance.  It is GREAT!!!!!  She does still fall a lot but not near as much as she did.                        

 Keelie in her braces.

                                                  

So as you can see they are small but they do help.  And she actually doesn't mind wearing them.

On to other things going on.......Keelie is really going through some difficult issues with being very stubborn and throwing fits.  She has never done this before but when she does it is almost never ending.  This comes along with her disorder.  We have the support group we communicate with and all of them go through this.  Their kids have fits and competitiveness, some have ADD/ADHD and some have anxiety.  I don't see anxiety issues with Keelie but that's not to say it won't come.  One can only hope.  Another issue is frustration.  Keelie gets really frustrated when she can't get across what she wants and she gets frustrated when she can't do something.  Especially if she thinks she can.  There are just lots of different things related to her disorder and we just have to work through each one on a "one day at a time" basis.

Remember Keelie is 1 of about 50 cases in the United States and 1 of about 150 in the world so she along with these others are guinea pigs, research candidates, etc.  So not only are the parents learning but the doctors are learning as well.  We are thankful for the research and the support group.

Josh and I did get our tests back and neither of us have the duplication.  I have not tested Cayden or Ryland simply because they seem to be doing pretty good.  Ryland does have an appointment with a geneticist in Jackson but I don't think I am going to take him.

Keelie's speech is getting a little better and she has made some progress.  Her physical therapists says her strength is getting a little better but she is still only measuring at about a 24 month.  And her occupational therapist says her fine motor skills are better, but again she is behind.  So we just continue with therapy.  I am hoping to get her in TK Martin Center for her to attend their school program and she should be starting HIPPO therapy in the fall if we get her in.  Fingers crossed.  Both of these will be very helpful for her.

Last note......I will be having my gallbladder removed tomorrow.  YUCK!!!!!  Due to some complications I have been having.  I'm not worried so much about the surgery as I am about the kids being taken care of.  I know my families will help in so many ways, but I just can't help but worry.  Please pray for Josh, his parents and my parents for them to handle all the chaos I handle on a daily basis.  Getting Keelie to therapy, getting Cayden to school and taking care of Ryland for the next week due to the fact that I will not be able to lift.  Thanks in advance.

I will try real hard to blog more often and update you in the life of the Gentry's.  Thanks for following the blog.