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.

Milestones

Once again it's been awhile since I've updated. Josh has been out of town so this mom has been busy. Keelie has been doing really good. She has had two very big milestones. Last week the speech therapist got Keelie to say daddy instead of da da. Well some of you might not see this as big but Keelie has this problem with reduplication. So this is huge for her. The other thing she said was puppy. She normally says pup pup. Again, she reduplicates. We were watching tv and she saw a puppy and said it without imitating anyone. So that's even better that she said it on her own. She has been doing really good with both words and has really only reduplicated da da. I am so proud. She is making progress.

Last weekend we had cayden's birthday party. Keelie had a great time. She ran around and played all of her energy out. It was a great party and it was great to see her play so hard. Her weak body gives out so easy but she did good at the party.

Thursday she woke up with a runny nose, congestion and she ran a low grade fever. She has not been too bad so I didn't take her to the doctor. I like to see her fight it off when possible.

This upcoming week she hopefully will be fitted for braces. I get tired of her falling down and I know she will enjoy wearing them. She has a strap she wears on her hips and she likes wearing it. The pressure secures and comforts her. So I am thinking she will have security and comfort with the braces. We shall see.

I'll try to be better at updating. Thanks to all of you who follow Keelie and her progress.