Therapy day

Today Keelie and I went to physical therapy and swallow therapy. Josh took Cayden and Ryland to the grocery store. She had a clingy session in physical therapy. She wanted me close. It took her a little while to warm up. She is still not able to jump but she is trying. And I believe in her mind that she thinks she is jumping. We then went to swallow therapy next. The therapist was pleased with some of the progress she had made. She had a couple of incidences this past week. One in particular that she did well with was mashed potatoes. Josh and I both just knew she was going to throw up but she just gagged a few times and worked through it. That is progress. She would normally pocket it and not eat any more. Pocketing is when she puts a food in her mouth she doesn't recognize or like and she puts it in her cheeks. She can't spit due to weakness in her mouth so Josh or I end up finger sweeping her mouth. The therapist wants me to keep a journal of her diet for one week. She wants us to try one new item and maybe try some pediasure. Keelie eats like a bird so she really needs something extra. We are going to try ravioli this week. She wants that to be our new food to try. We shall see how that goes. I bet she doesn't eat it.

We met Josh and the other children at home. We ate pizza for lunch and put them down for a nap. We had a pretty good rest of the day.

The results are in...

So today wee find out the results of the MRI. Hoping for some good news. So I got up this morning to take Cayden to her last day of school before Christmas break starts. The whole family was going. I put the kids straight to bed when we got in last night so I had to give cayden a bath before I took her to school. Keelie bless her little sweet heart never even woke up when we got home so she slept in her clothes. We dropped Cayden off and went to eat a little breakfast. Then Josh dropped me off at Kids Therapy Spot so I could give the therapist the prescription Dr. McVicar signed for Keelie's braces. We wasted a little bit of time in town. We went to walmart to look for a case for my iPad 2 my husband gave me last night for Christmas. So excited about this. We picked Cayden up at 10:30 and headed home. I called the doctor's office as soon as we got home.

It took them about 3 hours but they did call back. Her MRI showed that nothing had changed. So the nerves were still lacking the myelin sheath but at least it had not gotten worse. I was hoping for better but like I said at least it wasn't worse.

The speech therapist came at 3:00. Today is her last day with us then we get a new therapist starting January. It was sad to see her go. We will miss her and we wish her the best on her new journey with a baby on the way.

MRI day

Today is the day. Yuck..... We got up around 6:45. We decided to go ahead and pack everything up so we wouldn't have to load it up later. Cayden and Ryland were staying with the ladies today(Grana, Aunt Sandra, and Aunt Barbara.). Just thought that would be easier. We were hoping for a short day but you just never know. Keelie kept asking for her milk but she couldn't have anything. We got to Lebonheur around 8:45. She was put in a holding room pretty quickly but the wait was horrible. They did not come get her until 11:48. Ugh!!! The nurse came in several times and apologized. I told her Keelie was very hungry. In fact, Keelie got weak and ended up falling asleep in her Daddy's lap. Josh and I had to go to a waiting room and we were there for 1 hour before they came to get us. Longest hour of my life. We went to the recovery room where she had to stay for 15 minutes just to make sure she was going to be ok. Whew....glad that's over but now nervous for the results. Let's eat. We went to the cafeteria and ate. We decided to stay close and go to Dr. McVicar's office early hoping to see her early and not be so late getting home. Well that didn't work. Actually it did a little but not very well. We luckily were the first ones there so we were the first ones to see her. Unfortunately we didn't see her until 3:15. We got there a little before 2:00 but the appointment wasn't until 3:10. We didn't leave until a little after 4:00. I can't imagine what time we would have gotten out of there if we had gotten there at our appointment time.

Dr. McVicar looked at the MRI and she said the myelin sheath on her nerves in the frontal lobe still looked like it was missing and the space between her subdural spaces of her brain were larger than they were supposed to be. She couldn't tell us if it had stayed the same, gotten worse, or gotten better because she couldn't compare the MRI from July to this one and the report from today's MRI had not been read yet. So another waiting game. She did seem pleased with her speech. And she is talking more. She did recognize that her joints have a good bit of laxity in them. She did sign the letter for the braces for her legs and she wrote a prescription for them so hopefully the insurance company will pay for them. Lastly, she was very thankful and excited we had gotten Keelie in a research study. She gathered lots of paperwork for me to take to Kentucky. Now we head home. We will follow up in 6 months.

Therapy day

Today is swallowing therapy and physical therapy. I was up and going at 5:45 am. I had to make hot chocolate with marshmallows for cayden's class. They were having a Polar Express theme day. She wore her pajamas to school. Josh and Keelie went on to town and dropped cayden off at school while Ryland and I gathered things for cayden's class. We got there and helped get all her classmates some hot chocolate then Keelie and I went to walmart to waste some time before therapy. We got to therapy about 10:15 and left around 12:00. Nowwe are off to Memphis. We stay at my Aunt Sandra's house when we go. Thankfully she cooked supper for us and we didn't have to go out to eat. My mom and her other sister, Barbara, came up earlier in the day to do some shopping so there was a houseful. Now we nervously wait for tomorrow.

Bloodwork day

Monday, December 12, 2011 we had to get the blood drawn. Lots of phone time trying to find somebody who would do this very simple task. I called the pediatric clinic they said no and to call the hospital. So I called OCH and they said no and to call the local pediatric clinic that we use. So what now. I had two ideas. I texted a friend who might be able to help and I called Richard, the first steps coordinator. Richard got me in with the clinic but they said to come in Wednesday. Two problems with that. One being that we would be in Memphis that day and two the blood had to be drawn and shipped out the same day. Once it was drawn I had 24 hours to get it to the lab. Yikes..... So thanks to my wonderful friends' sister and her work staff. They were able to draw the blood for me, Josh, and Keelie. They were all nervous about Keelie but they got it. I hated for her to have to be stuck but I have to remember it is for her own good. After that we were able to run it to the fedex store and get it shipped out. Thank goodness that is done. Now just hoping it gets there safe and sound.

A diagnosis December 9, 2011

Today I got two very important phone calls. The first being a call from the genetist, Dr. Ward. She gave me a link to read that explains Keelie's disorder. It is a group called "Unique" that focuses on rare chromosome disorders. They offer information and support. So she told me to go to www.rarechromo.org and click on leaflets then scroll down to her chromosome number and read up on it. It is very informative and I am relieved to finally have a few answers as to what is going on with this sweet baby girl of mine. She did inform me that keelie's diagnosis is 7q11.23 duplication syndrome. A shortened version is dup7 syndrome.

The second phone call I received was from a research Dr. who I had emailed about Keelie. I had just happened to run across her information when i was researching keelie's syndrome. I thought this research was over. So I asked her if she had any information she could offer me to help with Keelie. she emailed me back almost immediately and asked for my phone number that the research was ongoing and she wanted to talk to me. I emailed her back and within 10 minutes she called me. We had an in depth conversation about Keelie and the treatments she was receiving now. She wants us to join her research and she wants us in Louisville, Kentucky January 3. But we had to rush to get everything ready. She wanted bloodwork from me, Josh and Keelie. So she needed an answer to now so she could get the blood kit in the mail. We needed to have the blood drawn Monday and shipped out Monday. Whew......life just got a little crazier. But I must say, I am pretty excited about the research. Not only for Keelie but also for others who may be affected. So I talked to the First Steps coordinator, Richard, and he got all the necessary paperwork for me to take to the research. Very helpful. Now to get the necessary paperwork from Lebonheur including MRI's, xrays, and upper gi/small bowel study. Oh, not to forget the EEG as well. So much to gather and get done. So time to get busy......ha ha.

The next few weeks

So over the next few weeks things have gone well with Keelie. She goes to physical therapy every Tuesday and speech therapy every Thursday. I called Dr. Ward several times trying to get answers from her. The genetics counselor is who I would normally talk to and she always seemed to make excuses as to why I didn't have any answers from Dr. Ward. I did talk to Dr. Ward once and she assured me the letter would be done soon. She did also tell me this is very rare and she was going to have to research it. I just didn't think it would take 2 months.

The physical therapist thinks SMO braces for Keelie's ankles would help with her falling all the time. We had quite a struggle getting the prescription back from Dr. McVicar but after a month of trying we finally got it signed. Now the issue is to get the predetermination letter signed so we can find out if the insurance company is going to pay for the braces. They are very expensive so I needed to know if insurance was going to pay before we bought them. Since we go to the doctor next week I will just get the predetermination letter signed then.

I've almost gotten this blog caught up. There could be a few things left out but I believe it is pretty close.

Swallowing Study

October 6, 2011 we went to Kids Therapy Spot to have a swallowing study done.  Keelie has an issue with food sometimes.  She will pocket her food in her cheeks and not swallow it.  The therapists says she is not recognizing the food texture and refuses to swallow it.  She use to love yogurt, bananas, baby carrots, and many other soft foods but now she won't eat them.  The therapist had us order a few chewing tools to use in her mouth and told us to only let her drink with a straw.  She also told us to give her something crunchy with her meal to help her recognize texture.  While we were there we went ahead and did a speech therapy session.  The speech therapist comes to our house every week.  This time she met us there.

Birmingham trip and news on Keelie's bloodwork

My mom and I decided to take a trip to Birmingham today.  We wanted to try to do a little bit of shopping and go to Costco.  We had been in Birmingham about an hour and I got a call from Dr. Ward, the genetist.  She told me Keelie has a chromosome disorder.  She said it is a duplication of chromosome 7.  So what does this mean?  Who knows and to this date I still don't know everything I would like to know about it.  She told me it is a minor duplication and the two main issues are autistic spectrum disorders and speech delay.  We all know Keelie does have speech delays and if you know Keelie you know she does not have any type of autism.  Although, she was tested for autism just to rule it out.  Today was not a good day.  I just wanted some good news.  Dr. Ward told me that we need to look at this as getting answers, the pieces to the puzzle and not to look at it as another problem.  That is hard to do because you never want anything to be wrong with your child.  We all love her so much and will do anything to help her.  Dr. Ward also wants Josh and I to be tested to determine if she could have received this from either one of us.  If she did then Cayden and Ryland need to be tested as well.  Before I hung the phone up with the Dr. she told me she was going to have to research the disorder a little because it is very rare and she didn't know much about it.  She told me she would do some research on it and write me a letter explaining things a little better.  Hopefully we are getting answers or will soon get answers.  Right now we will just love her with all our heart and do what is best for Keelie.

September 22, 2011

Today was her first day to have see the speech therapist.  Her name is Robin.  She came in and evaluated Keelie today and did a few speech things with her.  She did highly recommend speech therapy for Keelie.  The first session went great for Keelie.  Robin showed us a few sign language symbols to uses with Keelie so she can communicate with us a little better.  Sometimes she would get frustrated when we didn't understand what she wanted.  But of course most of the time we knew exactly what she wanted.  Ha ha.....Speech therapy is going to be every Thursday at 3:00.

Perdido Key

Because of the terrible summer we had my Mom decided to take us on a vacation.  Josh was in Nashville so it was just me and the kids and Mom.  Aunt Barbara met us there and stayed with us the entire time.  We had a great time.  The only drawback was that the Monday we left Keelie woke up dragging her right leg.  I don't know what had caused it or what it was related to.  She acted fine, she just seemed weaker than normal and her right leg was dragging behind.  It was great to get away and have a little bit of relaxation.  Thanks MOM.  We love her so much.

Appointment with Dr. Beatty

Today is September 9th, 2011.  Keelie has an appointment with the pediatric orthopedic, Dr. Beatty.  For those of you who don't know, Keelie was born with hip dysplasia and wore a Pavlik Harness for 8 weeks.  Keelie had some xrays done on her hips and everything checked out just fine.  Dr. Beatty doesn't want to see her for 2 years.  Guess the hips look good......Yay for some good news.  We ate some lunch and headed home.

Appointment Day August 31, 2011

Appointment day had arrived and we had a very busy schedule in front of us.  We got to Memphis yesterday.  We stay with my Aunt Sandra when we come.  So grateful to have her.  First was an eye appointment.  The geneticist wanted Keelie to have her eyes checked.  Everything on her eyes checked out great and we will follow up in 6 months.  The next step is to have her bloodwork done for her chromosome check.  That wasn't near as bad as I thought it was going to be.  Keelie did great.  She didn't even cry.  Now on to the appointment with Dr. McVicar, the neurologist.  I had several questions to ask her.  The first was if the medicine could be causing these episodes (as I like to call them) or if this is related to her seizures.  The way it was explained to me is that the seizure activity can spar off mini seizures.  So the answer is yes, these are mini seizures and we are going to increase the Keppra (anti-seizure medication).  UGH!!!!!!  Next I wanted to know about the nerves in her frontal lobe.  Dr. McVicar wants the MRI repeated to check on those nerves.  She doesn't expect any change but they have to keep an eye on them.  She is hoping they will continue to cushion themselves and fix most of that problem.  So we have a scheduled MRI December 15th.  Now for the scary part of the day.  Keelie swallowed a small peppermint and got choked while in the Dr. office.  I had to do the heimlich on her.  Scared me to death.  She had eaten one of these peppermints many times and never had she choked.  She will not ever have one again.  It's been a long day.  We will be back December 15th for the MRI and to follow up with Dr. McVicar.

August 20, 2011 A Bad Day

Today was not a good day for Keelie.  She had very little appetite and she was very tired.  She didn't eat breakfast and barely ate lunch.  We went swimming for a little while that morning hoping to stimulate her a little.  I put her down for a nap about 12:00 and she slept til 2:45.  She did eat a sucker and some smarties.  That's all I could get her to eat and I figured something had to be better than nothing.  Josh and I decided to go to Columbus for a little while and go to a couple of stores and eat supper.  We went to Back Yard Burgers and when we got there Keelie seemed clammy, warm and pale.  Josh went to order and when he came back he said, "She doesn't look right."  I had noticed but wanted to see if he noticed and he did.  Sometimes I think I am just paranoid.  Keelie was on the verge of passing out or throwing up or something.  We managed to get her to drink some sprite.  As she was holding her cup she was shaking.  After she drank a little sprite she started eating.  She ended up eating all her chicken, some of Josh's hamburger, a few fries, and part of a rice krispie treat.  I don't know what happened but in my heart I believe she got too hot in the car or she was weak from not eating much all day.  She was fine the rest of the evening.  She played outside a little while and we put her to bed around 8:45.

Still Catching Up

We weren't to follow-up with the Dr. for six weeks.  We had an appointment August 31st for her blood work for genetics, an eye exam, and a visit with the neurologist.  So between July 16th when we returned home and August 31st we reported a few instances of seizure activity.  On July 20th Keelie woke up at 8:15, which is very late for Keelie.  She was irritable and seemed tired.  She wouldn't eat breakfast but she did drink her milk.  I decided to put her back to bed since that is the best way to overcome a seizure.  She slept til 10:30.  The rest of the day wasn't great but it was OK.  Then some other days she had some tummy troubles but those could have been due to her medicine.  So far we were doing pretty good.

July 16, 2011

We had been in Lebonheur for almost two weeks and we were so ready to go home.  Today was the day.  Keelie was to try to eat breakfast and we had to be educated on seizure precautions and we were going to be released.  Yay for home......  The nurse came in and educated us on the Diastat, which is a medicine used if Keelie has a seizure lasting more than five minutes.  Then she went over the Keppra medicine as well.  Keppra is a medicine she takes twice a day every day.  It's supposed to help with seizures.  So we got released around noon.  We decided we wanted to go to Costco before we went home.  Granna had Cayden and she was going to meet us there.  Keelie seemed to be feeling good and we all had been stuck in the hospital for so long we thought it would be nice to do something.  Big mistake.  Keelie fell asleep before we got there.  So we had to wake her up.  This is one of the problems with her.  When she is awakened and has not had enough sleep she is limp and lethargic.  So we went in hoping she would perk up and it didn't happen.  The trip was a flop.  We didn't stay very long.  One lady told Granna that Keelie didn't look as if she felt too good.  If she only knew.  We all just get too emotional when this happens to her so we loaded up and headed home.  On the way home we realized the pharmacy closes at 6:00 pm.  We needed to fill her medicine before we went home.  We stopped in New Albany and filled the Keppra and we filled the Diastat in Starkville the next day.  We got home a little after 7:00 pm.  AHHHHHHH  home sweet home.  We ate a little supper, took baths and went to bed.

July 15, 2011

This morning they came after Keelie around 8:00 for the MRI.  This was not near as bad as the other tests.  The upper GI/small bowel was terrible with the long wait and the contrast drink and the EEG had all these little wires connected to Keelie's head.  The MRI was short and sweet.  They put us in a holding room when we got there.  We had to wait on someone to finish.  The MRI specialist came in and talked to us explaining what was going to happen.  We probably waited about 30-45 minutes.  Then I took her back and held her while they put her to sleep.  I then had to exit and wait.  I went back to the room.  They were going to call me when she was in recovery and I was going to go back down and bring her up.  But they actually called and said she was GREAT and they would bring her to the room.  Finally the hardest tests were done.  The geneticist came in this afternoon.  She had lots and lots of questions.  She wanted Keelie to have bloodwork done too.  Of course, we knew it was coming but bless her sweet heart.  She's been poked, pricked, prodded, put to sleep, etc.  She has been a trooper though.  The geneticist's name is Dr. Ward.  She was very thorough and had lots to ask.  She did want me to get Keelie involved in the First Steps of Mississippi Program.  Which I was aware of because Dr. Palmer had recommended it last week.  I did call them this past Monday and they were going to call me back and set up an appt.  But I have not been at home to follow up on any calls so it just had to wait.  Dr. Ward stayed about an hour or longer.  She wanted to know everything from prenatal to delivery.  She said to come back and do bloodwork because Friday was not a good day to do the bloodwork due to the lab workers not being available on Saturday.  She said to call back on Monday and schedule when we followed up with the neurologist that she didn't want us to have to stay in the hospital til Monday to do this test.  After she left we let Keelie get up and play.  She was getting cabin fever.  They have playrooms on each floor.  Dr. Palmer wanted her to be up and playing to stimulate her.  The rest of the afternoon and evening were pretty peaceful.. DaDaddy showed up too.  She was excited to see him and he was equally excited to see her.  She didn't eat much but she did eat a little.  I will take it.  Something has to be better than nothing.

July 14, 2011

Today is the day for the upper GI/small bowel.  They said they would be there to pick her up about 8:00 am and I could expect it to take 4-5 hours.  UGH!!!!!!  It was awful.  She had to drink that contrast while they xrayed her.  The Dr. did say she had some light reflux but not much.  But now she had to drink a lot more contrast for the small bowel.  They would take xrays every 30 minutes to an hour and we had to wait for the contrast to pass through the small bowel.  Keelie got very anxious because she had to sit still.  She was in this little infant bed rolling cart thing.  It was too small for her but they said she had to stay in it.  After a little while I got her out and let her walk around and play a little.  After playing a little I put her back in her cart and she fell asleep in that tiny excuse of a bed.  So we finally finished and got back to the room around 1:30.  My cousin Katie went to McAlister's and brought us some lunch.  I missed her but my food was waiting on me when we returned.  I went to the kitchen to eat because they thought Keelie might have an MRI later in the afternoon and she couldn't eat.  They had to put her to sleep to do the MRI.  Later we found out the MRI wasn't going to be until the next morning.  Mom got there about 2:00.  They were on there way to do the EEG.  Perfect timing because Keelie was sleepy and after about 10 minutes of testing she needed to fall asleep.  Now all the chaos breaks loose.  UGH!!!!  During the EEG the neurologists came in.  And boy did they ever come in.  5 DR's came in and they came in with tons and tons of questions.  So Josh sat with Keelie during the EEG and I talked with the Dr.'s.  Dr. McVicar was neurologist in charge.  I was very glad the tech knew what she was doing the glad that Dr. McVicar was in the room because during the EEG the tech got Dr. McVicar and showed her some occipital spikes while Keelie slept.  Dr. McVicar said she had only seen this 2 times in 15 years.  She was calling it Panayiotopoulos Syndrome, which is commonly misdiagnosed as gasteroenteritis and sleep disorders.  Ha ha......gasteroenteritits REALLY????  OK.  We are now getting some much needed answers. The Dr. also noted that Keelie had slow reflexes and she had some hypotonia.  She asked one of her colleaugues to test her reflexes and he was able to get one but it was weak.  She did say she was going to get a geneticist to come talk to us and get a genetic blood work up.  Dr. McVicar left but before she left she said she was going to read up on this a little and would see me tomorrow to discuss more.  And yes,,,,,I cried when she told me my child was having seizures.  That was all the testing for today and it was enough I must say.  Keelie went back to sleep and slept a good while.  Josh's parents showed up as well.  They had Cayden with them.  I was so glad to see her.  I missed her so bad.  When Keelie woke up Josh and I went down to the cafeteria.  My Mom, Cayden and the Gentry's stayed in the room with her.  When Josh and I returned Keelie was eating......YAY Keelie was eating.  Finally.  Keelie was acting like her normal happy little self.  It's so good to see her happy.  Everybody left and we went to sleep.  Or tried to anyway.

July 13, 2011

So Dr. Palmer, the developmental specialist who saw her last week, came in this morning.  His first words were that he wasn't ruling out gasteroenteritis.  He said it could be viral and working its course.  I flat out told him it was not gasteroenteritis and we needed to find out what was going on with Keelie.  So he started ordering some tests.  The first being an upper GI/small bowel.  Now while all this was going on my Mom was in Columbus with my Dad who was having surgery today on his bladder.  His bladder cancer returned and he was having another biopsy.  Life was pretty tough today.  Back to the tests.  The nurse came in and said they couldn't do the upper GI/small bowel until Thursday morning.  So we just had to wait.  Keelie ate her lunch and started acting a little funny.  I told Josh I thought she was having one of those episodes.  He ran out and got the nurse.  She came in and looked at Keelie and called the Dr.  The nurse checked her blood sugar and it was normal.  When the nurse was checking her she saw that Keelie was unresponsive and hypotonic.  She said it looked like she was having a seizure.  She left after a few minutes because the best thing for Keelie when this happens is to let her sleep it off.   My Aunt Sandra and Jimmy came to visit and Josh and I went down to eat while they watched Keelie and Ryland.  My Mom would be here tomorrow and my Dad was going to try to come Friday.  So today we rested and wondered what would be next for Keelie.

July 12, 2011

Keelie woke up great this morning.  I called in to Dr Odom and asked if they could make Keelie an appt with a GI Dr.  After being on the phone with them all morning and trying to figure out what to do with Keelie we decided to take Keelie back to Memphis.  We thought it would be best to go through the ER so Keelie could be seen quicker.  The earliest appt with a GI Dr. we could get was August 3rd.  So off to Memphis we go.  This time we were able to pack a few items.  Keelie slept most of the way to Memphis.  Poor girl just wasn't feeling good at all.  I tried to get her to eat a peanut butter cracker and she took maybe one small bite.  But it was small.  She wouldn't drink anything.  When we arrived at Lebonheur Josh dropped me and Keelie at the ER door.  When I got to the check in desk Keelie threw up.  I guess that's one way to get triaged fast.  I think we arrived at the ER around 3:00 pm.  The Dr. wanted an x-ray and lots of bloodwork done.  He tested her enzyme levels, blood sugar, CBC, blood culture, and some others.  The ER Dr. told me he couldn't find anything wrong with her.  Everything looked great.  So once again we were diagnosed with gasteroenteritis and were being readmitted for observation and further testing.  I told the ER Dr. I wasn't convinced it was gasteroenteritis.  We were in the ER til about 10:30 I believe.  It was forever.  Aunt Sandra and Jimmy came to the ER and waited with us and helped us get our stuff in the room.  We were so thankful to have them there.  When we got to the room they immediately started an IV and gave her 8 vials of some type of solution.  She screamed the entire time.  It was very hard to watch her go through that.  During all this Ryland was being a trooper.  He was only 5 weeks old.  Poor little buddy :(  So the night had ended and we were going to try to get some rest before the Dr came in the next morning.

July 11, 2011

Hoping we are back to a normal funfilled schedule this week.  Ha ha!!!!!  Keelie woke up perfect.  She ate a good breakfast and lunch. I took her to the Dr. in Amory this morning for a follow-up.  She was running around and acting like a two year old.  We ate lunch then I put her down for her nap.  I had to wake her up to take her and Ryland to Josh.  Cayden had an appointment with Dr. Cain for acid reflux.  Keelie didn't wake up good.  In fact, she was unresponsive and limp.  She had that look in her eyes and I just knew she was going to throw up.  She didn't.  I told Josh she wasn't acting normal and to keep a good eye on her.  He said he thought she must still be sleepy and hasn't woken up good yet.  Josh sent me a text while I was still in the Dr. office with Cayden.  He asked how much longer I would be.  I knew something must be wrong.  We were almost done so I waited and called him when we left.  I asked him if Keelie was OK and he said, "I think you are right.  She's not acting right."  My Mom and Dad had come over to visit.  Keelie had no expression, her body was limp....... she seemed to be doing it again.  I called Dr. Odom.  He advised trying to push fluids.  He thought maybe she was diabetic.  I gave her a popsicle and within 5 minutes she threw it up.  I called Dr. Odom back and he said to take her to our local ER and let them check her blood sugar levels.  They did a blood sugar test, blood work up, and a urinalysis.  Nothing showed up.  Everything was clear.  The ER Dr. suggested we take her to be tested for Celiac Disease.  He said that could be a possibility.  He said definitely something was going on but he didn't know what it was.  So we went home.  We put her to bed with the idea of taking her back to see Dr. Odom in Amory tomorrow.

July 9 and 10, 2011

Keelie had a really good weekend.  She played inside and outside and she acted like nothing was bothering her.  She had a good appetite and everything stayed down.  I was so glad to see my little girl laughing and playing again.

July 8th, 2011

Keelie had a good night.  She slept good and acted like she was feeling good when she woke up.  Today we try some solid foods for breakfast and if it stays down she gets to go home.  She did eat a little and it did stay down.  Her diagnosis was gasteroenteritis.  We got discharge papers on how to keep her hydrated and what she could and couldn't eat.  We were discharged around noon.  Keelie ate lunch before we left so Josh and I stopped and ate a little lunch on the way home.  We bought Keelie a drink.  The Dr. said to push fluids and keep her well hydrated.  Keelie rested most of the way home.  We went to my Mom's house and I got ready.  We had tickets to the circus in Tupelo.  The Dr. said take her.  He didn't see any reason why she couldn't go.  We left Ryland at my Mom's house and headed out.  The crowd was slim.  We actually changed seats because a girl behind us to her brother he couldn't have any cotton candy because he would throw it up since he had been sick.  I didn't want to expose her any more than I had to.  The circus was a disaster.  Cayden didn't like all the noise and Keelie just didn't feel good.  We couldn't wait to leave.  When it was over we got Ryland, headed home and went to bed.  The week had caught up with us.

July 7, 2011

The Dr. came in pretty early.  He asked several questions concerning Keelie, but the one question he honed in on was Keelie's development.  This Dr. was a developmental specialist and he was concerned that Keelie's vocabulary bank was so low.  Thank you God for sending this Dr. to Keelie's room to take care of her.  I had an appt. with a neurologist August 8th with Lebonheur.  Dr. Palmer said to keep this appt. to make sure of things going on with Keelie.  The Lebonheur Dr.'s work in teams.  They have residents, students, fellows, etc.  The team working with Keelie consisted of 7.  Which we were very excited about.  So now to Keelie.  Dr. Palmer wanted to come back and do a more thorough evaluation on her.  He wanted to eliminate some disorders.  Autism being one.  Once he talked with her he said," no doubt, she does not have autism. "  Thank goodness.  It had crossed my mind but I didn't really feel she had it.  All the Dr.'s came in and they all said she had gasteroenteritis.  They did bloodwork every morning.  And the Dr's said her labs look perfect.  They were diagnosing her with viral gasteroenteritis and it just needed to work its course.  Josh and I didn't believe it but we had to go with it.  We didn't have anything else to go on. I just didn't understand how Keelie could throw up in the morning and have a normal bowel movement in the evening and it be a stomach virus.  It just didn't make sense.  Keelie's appetite wasn't so good.  She would drink some sprite and juice but other than that she didn't really won't anything.  So now we just wait and let her heal.  She did have some dehydration but it wasn't severe.

July 6th, 2011

Keelie had a restful night.  She slept most of it and just was not her normal self.  She was on a liquid diet plus she was on zantac and fluids through IV.  She woke up a little while but didn't seem to understand anything.  She was so lethargic.  Josh, Cayden and Ryland showed up mid-morning.  She didn't even get excited to see them.  Josh held her a while then the doctor came in.  He said he would re-evaluate her later in the afternoon.  When he came back we talked to him of how Keelie had not improved.  He pressed on her belly and she threw up.  The Dr. didn't believe she should still be throwing up.  He thought maybe she had an intussusception and he wanted to do a CT on her belly.  She wouldn't drink the contrast.  I got concerned and asked the nurse to call him in I wanted to talk to him.  At this point I discussed transferring Keelie to Lebonheur.  He agreed.  He said that she could get an ultrasound on her belly instead of having to do a CT at Lebonheur.  It took a while to get the ambulance to the hospital.  We arrived at Lebonheur around 8:30 pm.  Josh and Ryland were right behind the ambulance and my parents were behind Josh.  We drove about 90 mph all the way there.  Then the waiting game began.  After being in the ER several hours we finally got to see the Dr.  They did x-rays, ultrasound, and bloodwork.  Nothing, absolutely nothing showed up.  They admitted us.  We got to a room about 2:30 am.  We got somewhat settled in and took a nap.

July 5th, 2011

Keelie woke up good this morning.  She did seem weak but she did eat breakfast.  She seemed normal.  After her nap she threw up.  I got her up and she was limp and lethargic again.  I decided to take her to the Dr.  He decided to admit her for observation and treat her for dehydration.  Poor thing only wanted to sleep.  We got to the hospital and got admitted.  My Mom stayed with us.  She went home the next morning and Josh came with Cayden and Ryland later in the morning. 

July 4th, 2011

I was so excited to be able to go to Smith Lake this weekend with family.  We all were in tow and ready to enjoy a relaxing, fun weekend boating, swimming, and spending time with family.  Saturday and Sunday Keelie had diarrhea one time each day and her appetite wasn't great, but she didn't act as if she felt bad.  We all got up Monday morning and got dressed to go to Jack's to eat breakfast.  Keelie was acting a little funny.  She was just laying around and acted as if she didn't feel so good.  She drank her milk but just wasn't right.  We loaded up and when we got there all she would do is lay on my shoulder.  Mom got her from me and sat her in her lap.  Within just a few minutes she threw up.  That's what was wrong with her, she had a stomach virus.  So we thought, but we were so wrong.  We loaded up and went home to prevent anybody else from getting sick.  She seemed fine the rest of the day.  She took a nap and she ate.  She even had a normal bowel movement later that day.  She seemed normal.  Later that night she went limp and got real lethargic.  She wouldn't drink or eat and she had a very glassy look in her eyes.  I put her to bed at 7:30 but got her up to try to make her drink.  I was scared she was dehydrated.  After many attempts to get her alert I decided to take her to the ER.  They ran several tests on her, did a CT scan, and an X-ray.  They didn't have any answers.  They couldn't understand why she was so lethargic.  They said she wasn't dehydrated.  They did discuss keeping her for observation but sent her home with the diagnosis of gasteroenteritis.

May 2011

Everything seemed to be going good.  It was birth month......Ryland was born May 24th weighing in at 8lbs 3.2 oz and measuring 22 inches.  He was a very healthy boy.  So glad Dr. Furniss suggested inducing one week early.

January 2011

Coming back from Christmas break I had two weeks of work left before I was to become a stay at home Mom.  It was January 5th, Granna had come to Starkville to keep Cayden and Keelie.  The day before I had taken Cayden to the Dr.  She was diagnosed with the flu.  Mom called me then sent me a text to call her ASAP.  Keelie had stopped breathing at my house when she was crying.  Mom got her settled down but headed to Amory to the Dr. office.  They knew we were coming.  I was behind.  We met in West Point.  By the time we got to Amory Keelie's fever was 103.00.  I asked for some Tylenol there.  Scared she was going to have a febrile seizure.  We got called back and Keelie was really bad.  She got upset and quit breathing while we were there.  She turned blue.  The Dr. put her on epinephrine and 5% oxygen.  Once she was good enough to be transported the nurse took her to the hospital. She remained on oxygen.  After many tests, Keelie was diagnosed with the flu, tracheal bronchitis, and she was in respiratory distress.  We were admitted for 3 days.  She was under an oxygen tent, had breathing treatments every 3 hours, and was given many meds through IV.  So I had two weeks of work left and I missed the first one.  What a way to finish out a job.......  This is just the beginning of the SAGA!!!!!!!