Two more Diagnosis

CVS and Hip Dysplasia

It has been a while since I have posted but things have been crazy in our household. Kylee has been sick for the last couple of weeks. It started out with what we thought were migraine headaches. She would just cry and cry and act like the lights hurt her eyes. So we were calling around to Dr's trying to get her treated for the migraines. It took her 3 days but she seemed better. Then the next week she started all over again however this time she also had vomiting issues with it. So we treated her again as a migraine headache. She seemed better for a day and then it seemed to start all over again. We had her checked out and did x-rays and they couldn't find anything to cause her vomiting. Today we talked with the GI Dr and he has diagnosed her with CVS (cyclic vomiting syndrome). So basically they will give her a medicine to treat the vomiting (same thing they give chemo patients) and then they will give her a medicine to try to keep her from having another "cycle". Now with all that being said...I think she has had this for over a year. In Feb of this year our friend Beau was diagnosed with it. His mom and I were talking and said how much it sounded like Kylee. Then she seemed to get better. That is how it works. They will have issues with throwing up and then they seem better. So just happy to have a diagnosis and a treatment plan.

While we had the testing done for her stomach we also found out that Kylee has hip dysplasia and it is getting worse. Well first off I never knew she had it...as far as I knew all hip x-rays she had were normal. She hasn't had one in a year so it developed some time in there. So we are off to add 2 more doctors to our list for that along with some shoulder clicking. We will be adding a rehab doctor and a orthopedic.

Computer Issues

We have been without a home computer for some time (part of my reasoning for not post) as ours decided to die. THANK YOU to my wonderful friend Ashley (Beau's mom) who is donating me one to I can stay connected with everyone. I have been lost with out it.

School

Well Kylee finished up school. She will be off for a few weeks and then start summer school. They had such a high response for summer school in her class that she is now limited to only 2 days a week. Which will be ok. Then on the days she doesn't have school we are taking her to the local hospital for therapy. She has come a long way with her therapy at school. She is holding her upper body so much better. Sitting alone much better (I am hoping for a complete independent sitter by her 4th b-day). Playing and reaching for toys. Tracking toys with her eyes and just liking being around people more. We are also looking at doing story time at the library with her so that it would be something similar to school. We are trying to keep her in a routine. She likes routine.

Vacation

Next week we are on vacation. As much as this breaks my heart we have decided to leave Kylee at home with our nurses during our waterpark stay. Kylee can only handle it at the waterpark for a short time and then she wants to be back in the room. With the 2 boys being so active and each interested in different things it is hard for just one person to take both the boys. It will be hard but good for everyone. Kylee will be much happier at home then anywhere else and we have such wonderful nurses that I know she will be in good hands and well taken care of (spoiled).

Happy Summer Everyone!!!

Surgery

Surgery

Kylee's surgery went well. She got her 3rd set of tubes placed and her adenoids removed. He said her tonsils were a little large but not bad enough that they needed to come out. Her surgery ended up running late and then she had some problems with her oxygen level dropping after she came out of surgery so it was a long night. She was fine while she was awake. So they couldn't decide if they wanted to send us home or not. We ended up getting into the McDonald House so they waited for her to fall asleep and then said we could take her to the McDonald House hook her up to our machines that we brought for her heart rate and oxygen and then if she did fine we could come home and if not bring her back to the hospital. So they discharged us at 10:30 lastnight we went to the McDonald House. She had a few drops in her oxygen but not much so we just got home. She is looking a little white and not herself but I am sure in a few days she will bounce back. Thank you for all the prayers and well wishes.

GI and School

GI Appointment

We had Kylee's GI appointment on Friday and all went well. In fact it was the best GI appointment we ever had. For once we didn't complain about #2 diapers and throwing up. We really think the medicine we give her every month has taken care of that. So we are now going to try to bring her down on it as she does have lots of #2 diapers when she is on it. We also talked about starting to feed her in her stomach and he was ok with that. He said whatever mom wants to do (he is a smart man). So we are going to come up with a plan to feed her quick feeds in her stomach during the day and then a slow drip into her intestine at night. Hope it works. He is also bringing her down on her calories again. She has gained another pound (30.7 pounds now) in just a few weeks. So she is going down to 27 ounces a day and the rest is water and the last thing on this list is she needs a bigger feeding tube as she has outgrown the size we have been using.

School

I went and sat in on school for Kylee on Monday and it was great. She does so well. On Mondays she has a very busy day...gym...occupational therapy...physical therapy and if time allows speech. They do so many fun things with her during therapy. They have a little scooter they rider her around on in the hallway and she has several older friends. When they see Kylee in the hallway on her scooter they come out to say hi. She also has a new "boyfriend" at school. Her last one had to move to the afternoon class and now she has a new one. I got a picture sent home on Friday of the two of them hugging. It was the cutest picture every. I guess he is always worried about where Kylee is and like to be by her. She also has another friend named Zoe. They ride the bus together and often have vision therapy together. Kylee has really grown to like her and will smile when I say her name. I just can't believe how far she has come at school. We have decided to send her to summer school and she will receive therapy at our local hospital as that is where her therapist at school are from. We are trying to keep things on a regular schedule as so she doesn't fall out of the routine.

Surgery

Kylee is having her surgery on Wednesday to have new tubes put in her ears (her 3rd pair) and her adenoids removed. We have called to the Ronald McDonald house to get on the list for Tuesday night so we won't have to leave so early on Wednesday morning. Please keep us in your thoughts and prayers on Wednesday. The surgery is minor but as we have learned in the last couple of weeks from another 1P36 family is that even when you take a child in for something minor it can have a horrible outcome. They had taken there daughter in to have her feeding tube replaced and ended up having to have stomach surgery, ventilator and helicopter ride. Scary.

The Giggles

Kylee had the giggles on Friday and it was so darn cute. When we were going to Green Bay to her GI appointment she would laugh every time we went over a bump. Then when we were about half way there she just started laughing about every little thing and she was laughing so hard she started to snort. It was so darn funny. Then she started to laugh Friday night every time I would say the word serious. She is a goofy girl but I love it. Days like that are priceless.

No More Blue Spells

Blue Spells

We took Kylee to the cardiologist on Wednesday and was told her heart look wonderful. She said things look better and better every time we come in. She said we have to come back in 6 months for a follow up because she is on the hypertension medicine but we didn't need to have another echo done for a whole year. That was good news but it didn't explain why she was having the blue spells. So as we have found out from some other parents on the 1P36 support group it is just something that happens. As long as she doesn't have difficulty breathing and her oxygen level is normal we are not to worry about it. They figure it is either poor circulation in which they told us to just keep more clothes on her and rub her arms and legs or it could have been that she was in a dysautonomia crisis. I am leaning towards the dysautonomia crisis. Kylee has not been formally diagnosed with it but just matches the symptoms to a tee. She has been in this
"funk" during these blue spells. Just unhappy and crying and then all of a sudden she was out of it and was the happiest little girl you have ever seen and let me tell you I am loving it. So heart looks great...no more blue spells and my happy girl is back. I'll take it.

After School Moments

My favorite part of the day is when Kylee comes home from school. This is always mom and Kylee time. I read her book on what she did in school that day and then we sit on the sofa and Kylee fills me in on everything. She sits there and smiles from ear to ear and just babbles away about her day. However you can always tell when it is therapy day because those days she is not so happy. She is doing really well with school and is starting to reach out for objects and play with toys. She got her first report card and she did pretty good. She was a E (meaning she can do it most of the time but not consistently) on everything except for she met her goal of being able to hold onto a toy and transfer to the other hand 3/4 tries. I am going to go sit in on therapy on Monday just to see what they are all doing with her and see what we can carry over at home and/or if there are anythings we can improve on at school. Should be a fun day...plus then I get to see all of Kylee's friends and for a few moments feel like I am a part of her school life.

GI

Next Friday we go see GI. Knock on wood things have been going good in that area. I am going to see if I can get orders to start feeding her back in her stomach so that our nurses can do it also. She has been doing great with it. Her #2 diapers have also gotten much better for most of the month. When she is on the medicine for the 7 days it is horrible. One day last week we had 10 diapers and they go everywhere. Once she is done with the 10 days she goes once a day. With that being said I think she did have an overgrowth of bacteria in her small intestine so I think she will be staying on the medicine for a while. What they usually do is put you on it for 6 months then bring you off until the symptoms come back and then put you on for another 6 months. As long as the c-diff stays away I will be happy.

Surgery

Surgery

Kylee is scheduled to have her adenoids taken out and new tubes in her ears on May 5th. It is funny how Dr's don't know there schedule. He told us he was going to try to get her in last Wednesday and if not last Wednesday then this Wednesday. When the lady called he had no openings until May 5th. So that is the big day. I am hoping this will help with getting rid of some of the ear infections and maybe help her eat orally a little better also if she is not so clogged up with junk.

Eating

Eating has not been going so well lately. Ever since we took her to the dentist to get her teeth cleaned she will not let you near her mouth. The school speech therapist has decided to start all over from scratch with her. Which means no orally eating but just getting her to be less defensive about have thing around her mouth. This is no unusual for Kylee. Every time she gets sick or something "upsets her life" she regresses in eating. We have however started to fee her thru her feeding tube into her stomach instead of her J tube and she is doing pretty good with it. She can take about 6 ounces right now which gives her an extra 3.5 hours off her J tube feed which is nice. So we are just going to keep working on trying to increase that number so she can spend less time attached to a tube.

Turning Blue

We have been having some issues with Kylee turning blue when she sleeps. The first time it happened in a very long time was on Easter Sunday but she has had it happen several times since then. I can't really figure out what it is. Her oxygen level and heart rate are normal so I wouldn't think it is sleep apnea. She gets lots of fluids so I would think it was degradation and the last time we saw the cardiologist she said her heart looked great. So can't figure it so I had to call in some help.....have a call into my Gurdian angel Deb at the special needs clinic. I thinking it has to do with circulation but not 100% sure.

Night Away

Friday night Jason and I are taking a well needed night away. We are going out for supper and drinks and then spending the night at a hotel in Appleton. Not to far from home but just enough for a little get away. We are so thankful to have such wonderful nurses that are helping us out so we can get this time away and such wonderful family that are helping with the two boys. We would be lost without them. Thank you.

ENT Appointment

We took Kylee to the ENT today and she is getting a new tubes in her ears and getting her adenoids taken out. We don't have a scheduled date yet but he is figuring this Wednesday or next Wednesday. He said taking her adenoids out might help some with the ear infections and some of her snorkle noises her nose makes but he said she has a deviated septum and that is where the noise it coming from. I never knew she had a deviated septum. Learn something new every time. So hopefully this will help her feel better and get her back on track.

Purple Day

Purple Day

Last week Friday was Epilepsy awareness day (wear purple day) so Kylee dressed in purple for school and the rest of us wore purple ribbons. Including big brother Collin. We also sent ribbons to school and all of Kylee's teachers and aide wore them. I also had several co-workers, friends, family and my sister and her fellow co-workers. It was so nice to see how many people wore purple to honor Kylee and others with epilepsy.

Crazy week

Kylee has been very crabby for several weeks. We first thought it was because she was being brought down off some of her seizure medicine. Then we thought it was from her hypothyroidism and being started on a new medicine. Well we decided on Monday to take her to the doctor and it turned out she has a horrible ear infection. It was so swollen they couldn't even see inside it. She has tubes and they are suppose to drain but because it was so swollen it couldn't drain. So we ended up having to drive her back and forth to the Dr's everyday for shots and to have her ear rechecked. It has been no fun. I think we really need to get back to the ENT and get it all checked out. Also my dad (Grandpa Eddie) has been sick and in the hospital however he is coming home today and we are very excited. As usual never a dull moment in the McGlin house.

Hope everyone has a nice Easter :)

Another Family

Tomorrow we are meeting with another family from WI with 1P36. They have a little girl named Chloe and live in Madison. We have been talking for many months and have always wanted to meet up but have never had the chance. Tomorrow they are going to be in the area so we are meeting in Appleton. I can't wait to finally meet them in person after talking with them for so long. I will be taking lots of pictures to post. It is going to be so exciting.