Saturday, July 26, 2014

Post-Op Update!

We are home and Kennedy is doing pretty well! She hasn't complained about her throat at all which is amazing! I had heard from a few parents that the lingual tonsil recovery was worse than the regular tonsils but that part has seemed to be super easy. I have her eating soft foods just in case - we don't want to agitate anything in there - but so far, so good. Her oxygen levels improved already during her night in the hospital so they are hopeful that this WILL help her apnea. I need to keep her on her oxygen at home until she can have her follow up sleep study in about 3 months. They want to make sure she's fully healed before they schedule it so they get accurate results.

Her ear has been another story. I didn't realize how extensive the work was going to be. They went in from behind her ear to fix it. They found that the hole was much bigger than they expected and had to patch about 70% of her eardrum so they're hoping it will take. We won't know if it was successful until her next hearing test in a few weeks. She has been in a lot of pain with her ear... the first night they had a huge bandage on it and that was really uncomfortable for her. It was a long night. Once they removed that, it was SO much better but she's still in pain with it and lets me know about every 15 minutes that her ear hurts. :( She's on around the clock pain meds still at this point but it's not really doing any good that I can tell. Hopefully time will help heal.

Here are a few pictures from the hospital...

In Pre-op waiting to go back... 

Post-op in a room, trying to eat. She HATED that thing on her ear. 

Friday morning - bandage off!! SO much better!

She still has small steri-strips behind her ear. One more battle scar. *sigh* 

Thanks for all the prayers!! The other kids were great and had fun with friends while I was gone. So thankful  they were able to step in and hang out with them. Now onto full recovery.... I'll post again when we get test results!!

Wednesday, July 23, 2014

Surgery Tomorrow


Kennedy's 31st surgery is tomorrow morning... They will be removing her lingual tonsils to hopefully help her severe sleep apnea, patching up her left ear drum to hopefully repair her hearing loss in that ear and doing a scope of her lungs to check for abnormalities. She will definitely be in the hospital overnight. When she had her regular tonsils removed she was in the hospital for 6 days so I'm praying for the best and preparing for... Not the best.

Please pray for everything to go well. This is the first time she will be intubated since her spine fusion surgery and that brings a certain amount of risk with it. The anesthesia department took a long time going over her records and are prepared for different types of intubation if necessary but it's still something we can be praying for tomorrow. Please be praying for her recovery. It was really rough last time and I've heard different views about the ease of this surgery. Please pray her blood sugar stays under control tomorrow and during recovery. She didn't have hypoglycemia issues when her other tonsils were removed so this brings a whole different level to the importance of her drinking after she wakes up.

Please pray the other kids are good while I'm gone! Keeghan likes to test his limits when I leave and with Frank out of town too (he's in Florida doing training), he may really push. Kennedy's doctor was insistent about the urgency of getting this done and so... We will get it done. I am thankful for friends who have offered to help with the other kids and friends who have listened to me panic (just a little) about tomorrow. It will be ok.  

I will update on Facebook and then here as well when I can.  

Wednesday, June 25, 2014

Big Kennedy Medical Update

Hello friends!! :) 

I was writing this REALLY long Facebook status when I decided it was sounding more like a blog post so I decided I would just update here! First a brief catch up for those of you who aren't my Facebook friends. If you just want to catch up on today's update, go down to the bold writing at the bottom. ;) 

In January, Kennedy went to the Down syndrome clinic in Denver for her annual check up. I mentioned then that she has been having headaches occasionally that were bothering her at school. We had had her eyes checked and knew that wasn't the issue so they suggested a sleep study. In April she had that done and I noticed they hooked her up to oxygen in the middle of the night. While we were driving home from that appointment the next morning, the doctor from the sleep clinic called me and told me that Kennedy's oxygen levels were dropping down into the 70's while she was sleeping and that she had severe sleep apnea. With levels that low she could potentially have heart issues among other things. Thankfully she had her annual oncology check up scheduled in May and with that always comes an echocardiogram so we found out a couple weeks later that her heart (and her blood) are in excellent condition still. The doctor from the sleep clinic got us hooked up to a medical supply company and started Kennedy on night time oxygen that night. It was quite a process finding a device that would stay on her all night but we finally got something rigged so it stays on her (most of the time). 

At her sleep study

With her nasal canula which NEVER stayed in

With her mask rigged through a hat... if nothing else, we're creative! haha


NEW INFO RIGHT HERE
In the meantime we've had a lot more appointments with ENT and pulmonology to try to figure out where to go from here. The common consensus is that her apnea is SEVERE and pulmonology suggested C-pap in addition to oxygen while ENT didn't think that would be enough and wanted to take out her lingual tonsils Kennedy had her facial tonsils taken out in August 2006 (who knew we had more than one set?!) and her ENT promised this would be an easier surgery. I sure hope so because that one was rough! Ugh! He pointed out that she also still has a hole in her ear drum that needs to be repaired and that he could do that at the same time. The good part about repairing the hole in her ear drum is of course, it will most likely fix her hearing loss in that ear. The good part about removing her lingual tonsils is that it will remove the need for c-pap and hopefully make her apnea a little better though it will probably NOT take away the need for oxygen. They may also do a scope while she is asleep to make sure there are no structural abnormalities with her esophagus that need to be addressed. 

As always with Kennedy, there are some concerns. This will be her first surgery where she will have to be intubated since her spine fusion surgery and since the back of her neck looks like this:

 They want to be really careful how they intubate her and what they use so they don't have to manipulate her neck too much. They also have to take her hypoglycemia into consideration and since she is now a "big kid" she will be slotted for a later surgery time so they are putting a plan in place to keep her blood sugar up since she will have to be NPO longer than she usually can go without food. She also still needs to be cleared by endocrinology for her thyroid because her last panel came back whacky (that's a technical term - "whacky"). I can't remember what number was off but they couldn't get her in until the end of July so ENT is going to try to get a consult with them tomorrow and get her either cleared or seen so she can be scheduled and healed before school starts. They are hoping to get this surgery done mid-July. Whew! Lord willing, she will only spend one night in the hospital and be right back home... of course they said that with her other tonsils too. *ahem* As soon as I have a surgery date, I will post again and I will try to do a post with pictures and stuff too. We've been having lots of lazy days and fun this summer! :)

Friday, May 16, 2014

Happy 10th Birthday, Kennedy!!!

It's here! It's here! Today is the big day, Kennedy! You are FINALLY 10! For months now you have been saying, "I'm really, really close to being 10." And as the days and weeks went by I watched you grow more and more excited as you planned your birthday party, talked about getting your military ID, and dreamed of being older and taller.

I have loved watching you grow this year, Kennedy, you have continued to surprise me and make me smile at every turn. I have loved watching you thrive at school, making new friends, soaring with your reading, and keeping everyone laughing constantly. I have loved watching you at dance, growing stronger physically and working so very hard at the thing you love more than just about anything else. I love watching your face light up when you know you're about to go on stage and perform... I hope you never lose that sparkle.

I know you are excited for this day because it means that you're older (and definitely wiser!), but don't grow up too fast, sweet girl. It's still okay to be little sometimes. It's still okay to play with your dolls sometimes, to play dress up sometimes, to color in your coloring books sometimes and to cuddle with your mom ALL the time! Remember that no matter how big you get, you'll always be my munchkin!

Happy Birthday my princess!

I love you a million, billion, trillion!

Mom

Thursday, May 1, 2014

Happy 7th Birthday, Keeghan!!

My sweet baby boy, today you turn SEVEN!! It's hard to believe you are getting so big! This has been such a good year for you. You have grown so much in so many ways. I have loved watching you thrive in school this year. You have grown in leaps and bounds both academically and emotionally. I have loved watching you pour through books and share the exciting things you are reading with me. I hope that your thirst for knowledge never fades! I promise to always buy books for you as long as you want to read them! I have loved answering your questions about the Bible this year as you re-read the stories for yourself and start to really comprehend what it's all about. I love your never-ending questions about everything, even when I don't always have an answer. I have loved watching you in Karate this year. You are learning so much there, too. You are learning self control and discipline and I see you working so hard to meet your goals! I know this year is going to be a big year for you as you keep moving forward. You make me laugh constantly, you make me stop and think, sometimes you drive me crazy, but you always always make me proud to be your mom! I can't wait to celebrate your birthday with you again tonight at dinner and again on Sunday at your party!! Happy birthday my little monkey! I hope being 7 will be the BEST year yet!!

I love you to the moon and back!

Love,
Mom

Sunday, March 9, 2014

Remember Me?!

Hello Bloggy World!!

So it appears I have been on a long bloggy break! I didn't really mean for that to happen but 2014 has come in with a bang and I feel like we have been going non-stop. Every time I sat down to blog, it just didn't happen. Thank you to everyone who emailed and checked in on us. I really appreciate it! :)

So for those of you who are FB friends, some of this will be redundant but I'm on a little FB hiatus right now too maybe some of it will be new. SO what have we done since the beginning of the year:

Kassidy has been enjoying her horseback riding lessons and is getting really good at it. She just finished her 10 lessons that she got for Christmas and wants to keep going so maybe this will be her "thing". Beyond riding, she's learning how to care for the horses, feed them, put on the saddle and other gear and muck their stalls (eww! LOL). She is anxious to be DONE with middle school, and I think we are both counting down the days. The last 3 years have definitely had their ups and downs for her. She applied to "choice" into a different high school in our district and has not heard yet if she got in, so she is kind of nervous about that, but she's feeling hopeful. The school she wants to go to seems great and we both have great expectations that high school will be a good experience for her. :)




Kameron is really enjoying middle school and comes home every day with fun stories about friends and classes. Since he's just starting out with his middle school journey, I'm glad he's having a good experience so far! His teachers seem to find ways to make every class interesting and fun, and that really helps. :) He has also decided to start taking Karate at Keeghan's studio. They're not in the same class of course (because that would be way too easy! HA!) but it's working out and he's having a good time. He just found out that one of the kids in his karate class goes to school with him so that's a fun connection to have as well. He came down with strep right after Kennedy recovered, so that was a bummer but with the help of antibiotics, he recovered quickly.
Kam in one of his daily bacon shirts

Kam on "Idiom Day" at school... can you guess what his idiom was? LOL 

His first day of Karate in uniform


Kennedy has been dancing, dancing, dancing! We are deep into convention/competition season and she has been enjoying every second! She missed her first competition because she got really sick (influenza topped with mono), but she's doing better now and is looking forward to her next competition next weekend. She is in 2 group dances and has a solo and duet this year. Her duet partner happens to also go to school with her so they were able to do their duet for their school talent show last week. :) More on that later. In January Kennedy went to the Down Syndrome Clinic in Denver for an overall check up. They said that she is doing GREAT and were very pleased with her progress. :) That's always nice to hear! They did order her a sleep study which is coming up in April and in June we are going to Philly to do a follow up at Shriners for her spine, but besides that, we are status quo medically which is nice!! Besides dance, she's been doing well in school and having fun hanging out with friends when she has time.

Headed to the Down Syndrome Clinic

Kenn doing her Solo


Kennedy and Elise doing their duet



Keeghan has been having fun in first grade. I can't believe the year is almost over. He has been growing so much academically this year. He has taken a love to reading and is pouring through the Magic Tree House books right now. We got rid of them after Kameron read them all in Tennessee (kicking myself for that one!) but we found someone who was selling their whole collection really cheap so we scooped them up. Score! It was like a belated Christmas present for Keeghan. He was THRILLED! Beyond that he has still been enjoying Karate class a lot and is so close to earning his next belt. They are having a "clean room" contest at the studio right now and the only way to stay in is to have your room clean EVERY night before bed. I LOVE this contest! haha It started the beginning of February and Keeghan is still going strong. The prize is a new Lego set so he's excited to WIN!

Keeghan getting his 2nd stripe. He just got his third last week!

Bowling with his friend Carly

He broke a board!

Frank has been very busy at work. He went out to the field for a few weeks and just got back. No deployments in his near future but they are definitely keeping him busy. He will be having surgery later this month on his shoulder to fix an old injury so he'll get some R&R then followed by extensive PT, I'm sure!

I have been busy with PTA stuff at the elementary school. The end of January is our annual Family Dance which I love planning every year. This year's theme was Neon and it was very... bright! LOL The kids and parents had a lot of fun dancing the night away! After that was over, we jumped right in to planning our first ever talent show for third-fifth graders. We had auditions with "celebrity" judges and a wide range of talent from singing to dancing to piano to animal noises to skits to a boy on a pogo stick! LOL The kids put on a GREAT show and I was so proud of all of them! We can't wait to do it again next year. Next up is the 4th and 5th grade play... I just do the program for that, so that will be easy, and then before we know it the school year will be over! Whew!

A few talent show pictures...








That's all for now. I will try REALLY hard to blog again before another two months has passed! :) Before we know it we will have some sweet kiddos birthdays coming up and they are both VERY excited!! :)


Before I go, here is Kennedy's solo for this year. :)



Thursday, January 2, 2014

Happy New Year!!

Happy New Year, blogland! :)

We hope you all had a safe, happy New Year's Eve! We stayed home and had a fun night with the kids - good food, fun movies and everyone stayed up until midnight!! :)

Drinking sparkling grape juice and watching the ball drop

In true New Year's fashion, we couldn't be too uneventful! Kennedy woke up on the 1st with a really red left eye. Her eyes had healed so well after surgery so it was surprising to see it red again! She complained off and on that it hurt, and then when evening hit she really started complaining and her eye developed a big bubble on it. I called the after hours service for her ophthalmologist and they said the on-call doctor would call me back. After waiting for an hour with no response, we headed over to the ER. The answering service called me back and let me know that the on-call doc wasn't answering his phone. Awesome! 

Anyway, the doctor at the ER was pretty concerned about her eye. He took a picture of it and said he wanted to get the on-call ophthalmologist to come in and look at her because he wasn't sure what to do. Unfortunately, it was the same doctor that I had tried to reach earlier. After 2 hours they finally got ahold of him and he refused to come see her, even at the urging of the ER doctor. :( SO we went home with no answers and no help. Kennedy cried the whole way home because they didn't help her and her eye hurt. Breaks my heart. 

Her ophthalmologist called me bright and early this morning to see what was going on. I filled him in and he said to bring her in as soon as she woke up. When she did wake up I noticed the bubble had popped in the night but her eye was still really red. We got ready and headed over to the office. He said she is far enough out from surgery now and was healing so well that he was pretty surprised to see her eye looking so bad. He said the bubble was a cyst and gave me eye drops for her. If they don't work, she may have to have another surgery. :/ Praying hard the drops work quickly!! 

In other news, while my mom was here for Christmas we were able to go to Breckenridge a couple hours from here to see some cool man-made ice castles! It was really neat!! Here are some pictures... 































It was really neat - and really cold! haha! 

My mom was supposed to stay with us through the New Year but sadly, my grandmother (my mom's mom) passed away on the 30th. She had been sick for awhile so it wasn't a total shock, but still hard. My mom flew to Michigan on New Year's Eve to be with her siblings and help them get things taken care of. I am thankful my grandmother is not in pain anymore.

Anyway, that's about all that's going on here... Kennedy gets to go back to dance today which makes her very happy! She's missed it so much! (I have kind of enjoyed the break though! haha)

I will blog again soon with more pictures. :)