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.

Frustration!!!!!!

It's been two weeks now since we went to see the geneticist. Now that I am not so mad anymore I can explain my visit with her. I have never had a good visit with this Dr. She never not even to this day explained to me what was wrong with Keelie. Thankfully, I was able to get Keelie in the research in Kentucky and get some answers. When we saw her a couple of weeks ago she was very short and almost argumentative. She tried to tell me Keelie has the joint laxity and hypotonia because I have joint laxity. She compared her to me. Really? She looked at my fingers to see how far back they would go. She said my fingers were loose, they shouldn't go back that far. Hey Dr. lady my fingers have normal range of motion. Trust me, I know. She also looked at some of my scars. I tried to tell her but she was determined that Keelie had joint laxity because i have joint laxity. So she told me Keelie has Ehlers-Danlos syndrome. Just what I wanted to hear. Another diagnosis for Keelie. That would be 3 now. I didn't believe it. Dr. if you would just read the article and Keelie's reports from Kentucky then maybe you would understand more about Keelie's disorder. She was just trying to grasp at straws because she is too busy or too lazy to try to read up on Keelie. Remember, she called me and told me to go to the website rarechromo.org to read all about Keelie's disorder. Her words were, "it is a beautiful website. You can read it and understand Keelie's disorder better.". Thanks.....I really wanted to research my daughters disorder but pay you the big bucks to tell me how to do it. Ok, off my soapbox. As we were about to leave, she had to print out a leaflet for me on Ehlers-Danlos syndrome for me to read and see what I thought. Once again, who's the doctor here. She really said for me to read and see what I thought. Well, I did read it and I don't think it sounds like Keelie. So to answer any questions I emailed the Kentucky Dr. She doesn't know anybody else with the duplication with Ehlers-Danlos syndrome.

My thoughts.......the geneticist in Memphis doesn't know anything about Keelie's disorder so she just tries to come up with something and/or she doesn't like the fact that Keelie is in the research in Kentucky. This was a wasted trip. I learned absolutely nothing.

Now a little bit on the brace journey. And what a journey it has been. We went Thursday to get the braces. Yippee.....wrong. First, they only sent one brace. What? One brace. Ugh! Second, if you have followed remember she was measured in late October so guess what? The one brace that was sent is TOO SMALL. Well, duh. It's been 4 months. So back to the factory they go and we continue to wait. Supposedly, the braces will be at therapy Tuesday when we go. The brace guy instructed us so he was going to drop ship them and follow up with us next time he comes to Starkville.

Lastly, I have a prayer request. I'm a little hesitant putting this on here but I do believe in the power of prayer. Ryland is not meeting his milestones and the pediatrician wants him tested. Some things Ryland does reminds us of Keelie so it's smart to go ahead and do the genetics test. If for nothing else, for peace of mind. Please pray all comes out normal. I'm really not wanting to face this with 2 kids. God doesn't give us more than we can handle. The appointment is not until June but I have a conflict so I am changing it. Hopefully, I can get a sooner date.

Thanks for following and for praying. You all mean so much to us all.

Interesting......

Well it's been an interesting week. Busy as always but Keelie has had some real issues with frustration. She has been crying a lot and trying to tell me what she wanted but I just can't seem to figure it out. I have always known what she was talking about or wanting until now. Tuesday is our busiest day of the week. Keelie cried from the time we left the house to the time we dropped off Cayden at school then to our first stop. I couldn't for the life of me figure out why. We had a few errands to run and she calmed down by the time we got in the parking lot. We went to therapy and everything went fine at physical therapy and speech therapy. She ate lunch and napped then we went to get Cayden and take her to dance. All was well until after supper. Me and the kids met my parents at Golden Horn restaurant to eat supper. Josh was out of town again so we decided to go out to eat. When we left the restaurant Cayden rode with my Mom to my house and Keelie and Ryland rode with me. I picked the phone up to call Josh and Keelie started crying/screaming "mine", over and over and over. I asked her one million questions to try to figure out what was wrong. I just couldn't figure out what she needed or wanted. We got home and I went to put her to bed still screaming "mine". I told her to take my hand and show me what she wanted (which often works when all else fails). Still nothing. Tried several times putting her to bed and she would get worse so finally my Mom rocked her to sleep. That was the only way she would settle down. She did this several more times during the week but not as bad as Tuesday. I pray she is not about to start going through some frustration problems, which is definitely possible.

Wednesday she had occupational and speech therapy. She did really well but she did have some issues with some of her exercises in OT. She is unable to lay down and prop on her elbows to write or color. She lays her head down on her arm. She is lacking the neck strength and trunk strength to hold her up. She measures a 12 month in her fine motor skill scores with OT. She did say one more new word this week. "tummy". Lol. So that's 3 words now she is saying well.

So to end my week I got a phone call from the geneticist at LeBonheur reminding me of an appointment scheduled with her on Monday, February 13th. I was unaware of this appointment. I talked to Dr. Ward in November and tried to see her in December when Keelie had her MRI, but she was too busy to see her. She told me her next appointment was not open til April. So I don't know when this appointment was made nor do I know why it was made but we are going. She may have the bloodwork results and won't to talk to us or maybe she decided to squeeze Keelie in to see her since she hasn't seen her since last July. I just don't know. My Mom and I are going to leave Sunday to head to Hernando to stay with my aunt. The appointment is at 9:40 so it makes sense to go a day early. So thankful we have someone to stay with. We are at the lake house this weekend so we are leaving from here. Josh couldn't go because he has to work. Glad my Mom was free. So I will let you all know how that goes.

Thanks for following the blog and for praying for Keelie. God answers.