JUST ANOTHER DAY IN PARADISE!

Well, I knew it was bound to happen and today it finally did. Kaidence pulled out her feeding tube. Now unlike before when she would do this we can't replace it because it is in her intestines, not her stomach. Therefore, we took a little trip up to PCMC to have it placed again. She has been better with it. Yesterday Kaidence had some applesauce for breakfast and some corn and sweet potato something for dinner. She was so excited to finally eat something after months of not eating that she was panting like a little doggy. In a cute way, of course. She can only have 5-10 tiny bites per meal, but today we joked that we gave her an inch and she was trying to take a mile when she pulled out her tube at the breakfast table. She is starting to get a little fuzzy from the steroids but so far not too bad. We did have to adjust one of her immunosuppresive drugs because the blood levels came back too high. Everything goes in her mouth and so we have to be sure that the boys don't touch anything of hers. This is most likely the cause of McCadens sudden "clean craze" behavior. Everything has to be clean for him. He will scrub my sink for 30 minutes and talk about all of the germs in it. He took hand sanitizer and a mask to school the other day for show and teach. Everything he talks about is somehow related to germs. He left my sisters house today because her little girl had a cough that she had been on antibiotics for but he called me to pick him up because he was afraid he would get sick germs. However, he has been a super helper lately. He takes out the garbage, vacuums, cleans the bathrooms, loads and unloads the dishes, dust......you name it, he has been doing it without being asked. I have to keep telling him to take a break and go play, but he says that he wants our house to be "spic n' span." He has also been cleaning my sister and my moms house when he goes over. Camden still has a yucky cough. He loves me to play trains with him and he trys so hard to be a big helper as well. He loves his sissy and when she cries he says "it's ok sissy I am not going anywhere." Both of the boys were so afraid today that we wouldn't bring sissy back from the hospital today. I didn't even stop to think about that. They were so excited when they came home and saw her in her room.

We are so happy to all be home together. I love having everyone sleeping in the same house and not have to call and check up on Kaidence every night and morning and whenever I get up in the middle of the night for a little potty break. Our home has a feeling of love and peace in it (mixed with a lot of CRAZINESS) but that is what makes our home "HOME" and we wouldn't have it any other way. "simple pleasures are life's treasures"

COUNTING BLESSINGS!

Today Kaidence had another Cardiology appointment. Things look well. She may be coming down with a little viral infection so we will keep a close eye on that. We just need to keep her out of the hospital. All of Kaidence's labs look great as well as her echo. We saw some PICU buddies like Mason and Alex as we were in the office as well as some of our other friends that work there. We will always love those that we have met along the way. Things have been a little less crazy. I am trying to unpack still from the hospital (it's been worse than unpacking from a really long vacation). I just don't have enough places for everything. I have been blessed to have my mom and mother in law helping me on Mondays and Thursdays. I would be crazy without all they do for me. I am trying to get back into the mom mode for McCaden and Camden and do all of the little things like homework and reading to themas well as getting their chore charts going again. I hope they aren't forever affected by this little trial of ours. We are so very grateful for the many ways that we have been blessed and a day still has not gone by that I don't think of all the good deeds that our family has been given from all of you. And everyday my heart is grateful beyond words for the beautiful gift that we have been given and to that family I am forever thankful.

Deseret Morning News!

The article came out this morning in the Deseret News it is under the "Mormon Times" section. It is in both the paper and on the Internet if you are interested. Thank You for all that has been done for our family and thank you for the many ways that you have touched and blessed our lives. Have a wonderful day today!

With Hope and Love,
Shauntelle

MORE BUSY WORK!!!

Well, today went much better than yesterday. I had a crazy day yesterday trying to figure out home health, speech therapy, ordering special food thickener online and the never ending fight to try to get Kaidence Social Security. In order to get a hold of anyone in social security you must have the whole day to do nothing but wait on hold. I unfortunately don't have time to do that, neither does anyone else. I think they figure that if they keep you on hold long enough that you will eventually give up and they won't have to give you money. Not a very user friendly system by any means. We have been trying since August to get it to help cover medical bills and her $600 a month prescription co-pay cost. No luck so far but I am not giving up. Camden is still sick, but McCaden is doing much better. We are so happy with Kaidence's progress. She can roll from her tummy to her back. The dog is barking at the moment and Kaidence is not sure if she should laugh or cry so she is doing a mix of both. Kaidence has another Cardiology appt. tomorrow. So far so good. Thanks for all of your love!

KAIDENCE PASSED PART OF HER SWALLOW TEST!

Well, today was the big firs appt. I feel a little tired from packing up all of the equipment and Kaidence and then as I was leaving and trying to get Kaidence in the car with all of her equipment still hooked to her I noticed that the monster van next to me was parked only inches away from my car. Kinda made me a little grumpy. Kaidence did great with her big long day today. We also had her ENT appt. today as well and guess what! She passed her FEES study to a certain extent. Not perfect but MUCH better than before when she could not even swallow at all. She still has a little swelling so I will only suction when it is defiantly needed. Speech will start coming to our home and working with her. All of her liquids have to be thickened to the consistency of honey. She was so excited when they showed her a bottle with something in it. She also liked the chicken dinner but it was a little to sticky for her. She has to relearn swallowing and the process of eating and I think that with time things will move along. In fact today after they gave her food, I gave her some nasty Nystatin that goes in her mouth and I heard her actually swallow instead of spitting it out. After her appts I went back to our old spot in to PICU to pick up a poster I had forgotten. I met some of her nurses at the back door because there was no way I was walking through that unit with all of the sick patients. It was fun to see our friends even if it hasn't even been a week. Even though we have cardiology twice a week, we probably won't venture up there again until late spring because I am too scared and don't want to take any chances. kaidence of course wore her little mask and she is getting better at keeping it on. Whenever she decides to rip it off I throw a blanket over her stroller. Gotta keep those germs away. Especially that RSV. It makes me very nervous taking her anywhere, but supposedly the mask will help protect her when we go to the hospital as long as people aren't' smothering her. I am a germ freak and carry my own avagard sanitizer wherever I go. Things like this make me paranoid and now I will worry for days if she has been exposed to anything. I brought her home and changed her clothes and washed her mask.
I love having all of my family home together at night. It feels right. kaidence loves it as well and settles in every night in her cozy little bed. Her favorite toys however are her stethoscope, hospital badge & pulse ox lead. She will pick those toys off a tray full of others. I have a hard time keeping her oxygen on at night. It is always in her eyes or mouth. I think she has finally fallen asleep and so I am going to go and hook her back up to everything. I have to be very, very sneaky!

GETTING IT TOGETHER!

Kaidence is very happy. We washed her hair the real way today, meaning not with a wash rag only. We stuck her head under the faucet like we used to do and she loved it like always. I forgot that her hair could actually smell good. Her brothers continue with the nasty cough but I think that we have kept them away from Kaidence pretty well. I have been trying to finish organizing all of the odds and ends like updating the diaper bag so that it doesn't have size 1 diapers in it and old formula. I have a lot of equipment that I have to take with me wherever we go.

Tomorrow we have our first Cardiology appt. as well as an echo, x ray and labs. We also have an ENT appt. for her swallow test. I am not sure that she will pass, but I think that we have made a lot of progress. She needs less and less suctioning and about 4 times today I have heard a loud gulping swallow from her. I have also noticed that she doesn't have the loud obstructed airway noise she used to make while sleeping on her back. I also got Kaidence to suck her Binky today. Now any of you that know me know that I am Anti -Binky past about 6 months of age, but they think that it will help Kaidence with her swallowing and learning how to eat again when the time comes. We tried giving it to her in the hospital and she acted like she had no idea what to do with it, but now she does. Hopefully things will go well. Oh by the way, the article in the newspaper isn't out until Thursday.