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.

Happy St Patrick's Day

Happy St Patrick's Day from the McGlin's

Always has to have the finger in the mouth for pictures. She is so hard to get a good picture on. I think I took 5 and decided this was the best. She had enough. She was all in green and has her toe and finger nails painted green. She is a true Irish girl.

Hypothyroidism

Last week an>took Kylee to Milwaukee and got the diagnosis of hypothyroidism. Just another diagnosis and medicine to add to the list. At least this one isn't a major one.Hypothyrodism is very common in children with 1P35. Kylee has gained 10 pounds in less then a year and has gained 4 in the last 3 months. We are thinking it may have to do with the hypothyroidism and are hoping that the weight gain slows down.

Another Wisconsin Family

We have been told by our nurse coordinator that there is another family in WI with 1P36. I think if I am counting correctly that will be 4 families including us. There is one in Madison (yes...Ms Chloe that is you) and then 2 families down by Milwaukee. There is suppose to be another family some where around us that Chloe's family was told about but I don't think any contact has been made with them yet. So with several families in the area Chloe's mom is putting together a little weekend this summer for all of us to meet. Every year there is a 1P36 conference but this year it is in Utah and we won't be traveling to it. Next year it is suppose to be in Minnesota and I am for sure going to be there. I can't wait to make contact with this new family from WI and let them know that there are some great resources out there for them. I would be lost with out my 1P36 family.