That Darn Cleft!!!

Nathan, Ellie and I trekked up to Primary Children's again today to have Nathan's helmet status evaluated. When I saw Dr. Siddiqi I mentioned to him that because of my available FMLA time, we would have to move Nathan's original final cleft surgery date from January 7th to sometime in February. The doctor said that would be fine. He looked at Nathan's head and said that it would be ideal if we could keep the helmet on him at night for one more month, but if it was too hard with the BiPap machine, that we could leave it off. As the doctor was getting ready to leave I asked if I would need to see Dr. Yamashiro (the orthodontist who made the temporary prosthesis). Dr. Siddiqi said that he'd take a look at Nathan's mouth and see. We laid Nathan on his lap and when he opened Nathan's mouth, the prosthesis started flopping up and down! I rolled my eyes because even before Dr. Siddiqi opened his mouth, I knew what he was going to say!

"We've got to get Nathan back to the operating room to put that in more tightly."

I'm still wondering if there is a rapid rewards program for the use of the operating room. This will be the 11th time that Nathan has been in the operating room this year! More over, this is the 3rd time that prosthesis will have to be screwed into his mouth!

I'm grateful for a mild mannered baby who still loves me. Its probably because he isn't old enough to know how many times Jake & I've had to sign the consent form to allow Nathan to be operated on!

Mark your calendars! Nathan will be back in the operating room on November 19th for the prosthesis and again on February 9th for the final repair.

The Imaginary Friend

(I'd post a picture of this, but obviously it wouldn't show much!)

About the time that Nathan was born, Elisabeth concocted an imaginary friend named Alan. Now, Jake and I aren't totally sure where the name came from, but Elisabeth told us one day that she wanted her friend Alan to come over and play. Who's Alan? Aparently she is a little girl with the following attributes:


Alan:
1. A little girl
2. Age 5
3. Blonde
4. Has a little brother coincedently born on Nathan's birthday
5. Loves barbies
6. Has a dollhouse
7. Frequently is sent to the "Thinking Chair" by her parents
8. Her little brother also lived at Primary Children's
9. Her little brother also had heart surgery
10. Her little brother has a feeding tube
11. Her little brother is named Ian.
12. Loves Polly Pockets and Disney princesses
13. Coincidently was hit by a car the day after Elisabeth was scolded at Primary Children's for running in the parking lot and not watching for cars. She was hit by a car and died according to Elisabeth. However, 2 days later Elisabeth decided that she was resserected and Alan was able to go back and live with her parents.
14. She likes to sleep on the floor in the hall
15. Alan is the mommy to a child that is Ellie's age (not sure how she came up with that one!)
16. Alan's mommy doesn't ever have to go to work
17. Alan's dad is a teacher
18. Alan can carry on lengthly conversations about absolutley nothing. Ellie will talk to her on the phone for hours!
19. Alan goes to school.
20. Alan's birthday is the same as Grandma Ellinger's and Elisabeth


Funny thing but I don't ever remember having an imaginary friend. Of course, I had Janice though. There's something to be said about having a sibling 13 months younger than you!

From what I've been told, Jake had some imaginary friends named Yum Yum and Yuck Yuck. (I'll have to get the full story on that one later and post the details!)

Alan is truly Ellie's best friend. In her own little way, this is Elisabeth's way of trying to understand what is going on in her life and to help her cope with it. I feel bad sometimes for Elisabeth... it can't be easy to have been an only child for 3 years and then suddenly not only have a new brother enter her life, but a new brother with a ton of special needs. I think sometimes she feels left behind when we have to take Nathan so often to different specialists and spend so much time teaching him to roll and talk and eat; things that most babies just pick up on their own. That being said, she has done amazingly well for the most part at helping care for him and be a good big sister to Nathan. Jake and I often joke that if Ellie doesn't kill her brother first, that she is going to be the reason he talks, crawls and eats.

For Christmas, Nathan is going to be asking Santa Claus for the Baby Signing Time DVD's. Its not that Jake and I aren't going to work hard with him to teach Nathan how to make the baa, maa, da etc. sounds... with the cleft surgeries and jaw problems Nathan has yet to make these normal sounds. He will be having a speech therapist come every week to work with him. However, I don't want Nathan to get frustrated in what he wants and I want all of us to be able to communicate better.

Minnie Mouse and Little Dinosaur

This year Elisabeth, Nathan, Jake, Grandpa Ellinger and myself went to the trunk or treat. We really missed having Grandma there and hopefully she will feel well enough next year to attend. This was really the first year that Elisabeth TRULY understood what was going on. She made a very feeble attempt to say trick or treat. I think that was mostly due to all of the older kids who came out of the woodworks and would just open their bags and expect candy. She had a really good time though.

Nathan didn't really know what was going on and at first did not want to be in his costume. I woke him up from his nap to go to the Trunk or Treat and he was not a happy camper! However, by the time we got there he was his usually happy self.

By the time that we made it around the cars, Grandpa was on the verge of running out of all of the candy that both Jake & I and he had bought! Ellie proudly gave away the last of the candy to the trick or treaters and then we went back home to show Grandma our cool costumes.

One fun thing that Jake and I did was go back to our old ward in Spanish Fork to trick or treat around the main culdasac. It was so fun showing off Nathan to some of our friends! What was especially fun was that about a month ago I had run into Leslie Walker from our old ward during one of my audits. I had updated her on life and she passed on the information to her husband who is on the high council. Her husband happened to be speaking in our old ward about adversity and so he included us in his talk. There were many ward members who said how great Nathan looked and were happy to see us. I like our new ward, but there was something really special about the ward that we just came from.

By the time we got home at 9:00 p.m., we were all STARVING for real food and tired as can be. Elisabeth had a break down when I told her to take off the costume and she cried about being told to go to bed. Finally she told me she would go to bed. Jake checked on her a couple of minutes later and she had made herself a "New" bed on Nathan's changing table! She had also fallen asleep on top of it! Of course Jake had to grab the camera and take a few pictures!

The only bad part of Halloween is that our plans with Tammy and Ben fell through. Elisabeth was sad that she didn't get to see Kayden! That's ok though, maybe next year we can go with them again.


It was awesome to see Elisabeth in my old Minnie Mouse costume from when I was a kid. She looked adorable (what can I say, I'm pretty biased!).

Look at You Now

I watched this on You Tube this afternoon and it really made my day.

A new country singer, Mark O'Shea, from Australia just moved to Nashville and filmed this heart video at the childrens hospital. Mark was born with TOF and had his repair when he was 6 months old. What's really great is that look at what he's doing with his life and how far he's come. Mark has the same congenital heart defect as Nathan. At the end of the video, there's a little boy named Nathan who years after his repair is dressed up in a baseball uniform and playing ball.


Here's the link:

http://www.youtube.com/watch?v=Dtxlv6Hoerw




Here's the lyrics:


Look At You Now

V1
I know it was never easy, when nobody was on your side
Back home where the girls were mean and the boys were high
You'd hear about every party, but you'd have to invite yourself
Sit spending the whole night wishing you were someone else
Living on the outside like you never would fit in
You took your chance with both your hands and baby you showed them

CH
Look at your life like a diamond, look at you shine from inside out
Maybe you took some time to find it oh but look at you now
Baby I never saw it coming, you hit me like lightning from a cloud
Wherever it was that you were hiding, you found your way out
And look at you now

V2
Shy girl afraid of the water, now you're leaving em in your wake
So you fell down seven times but you got up eight

Though I hardly recognized you standing face to face
Your just like a butterfly that's finally come of age…

CH

BRIDGE
Seeing you across the street, you almost knocked me off my feet
It's been so long I can't believe it's true, It's you…


Nathan a couple of days after his heart surgery in June.




And look at you now!

Just Calling Like She Sees It

Children don't really understand the idea of being polite; even when its hard not to be. Elisabeth is no different in that regard.

This morning I took her to Stone Drug after her doctor's appointment for a UTI to get her some medication. Walking in the door right in front of us was a punk teenager with EXTREMELY baggy pants. He was talking on the cell phone and not paying attention to anything around him. As he walked his pants started sliding down his behind and after 5-6 steps, his pants fell down to his knees! I was appalled because I didn't want to see his brick red boxers (with a nasty logo on the bum)and I certainly didn't want Elisabeth exposed to that. The guy got off of his phone and reached behind him to pull up his pants.

Without missing a beat Ellie said really loudly: "Mommy, why doesn't he wear pants that fit? He looks so silly with those pants! Mommy, you said we wear pants not to show our underwear! He's not obeying his mommy!"

It was all I could do not to start laughing! I know he heard everything she said I hope he actually thinks about it!

Can she call it like she sees it or what?

Happy Birthday Kathleen!

Yesterday was a very important day; not only was it Julia Roberts birthday but Kathleen's birthday as well! For Kath's birthday, Jake made a german chocolate cake and bought Breyer's chocolate ice cream. We were slight losers and forgot to buy birthday candles, so Kathleen became 007 for the night! We gave Kath a picture frame from Rod Works and then we carved pumpkins.

Like I mentioned in an ealier post, every kid needs an Aunt Kath. Last night she taught Ellie to gleek (then Kath put herself in time out for spitting), and also that pumpkins and people can be bulimic! Seriously though, she loves each of her nieces and nephews individually and is so good to come and babysit when needed. For us, she has been so helpful with Nathan because most people are still scared to take care of him with his wretching issues. Kath isn't afraid to be herself and I think that's important for the kids to see.

Ellinger Family Halloween Party on October 25th

Even though Grandma Ellinger wasn't able to come to the party because she had to have surgery again, Kathleen was awesome and took over the party. She is such a great aunt to the kids; every kid needs an Aunt Kath. At the party the kids made spooky shakers, read Halloween stories, played Halloween Bingo and finally decorated pumpkin cookies. Elisabeth loved being able to get dressed up in her Minnie Mouse costume an extra time. One thing that is really great about the Ellinger cousins is that they are all so close in age and they all get along so great! Elisabeth always talks about Libby, Mallory, Keaton and Kierra and is excited to be able to see them. We had a fun time at the party!

Out of the Mouth of Babes

Elisabeth can be such a character sometimes on purpose, and then there are those moments where she really believes what she is saying!

For example:

While on our most recent trip to Barnes & Noble we bought "The Polar Express" to read to the kids for Christmas. Jake and I have been having so much fun doing the tourist in our own backyard thing that we decided our fun Christmas adventure would be to ride Heber Creeper's Polar Express. We bought tickets on Saturday night and then yesterday morning we read the story to Elisabeth. As we were going thru the story we would ask questions to make sure that she was understanding what was going on. We read the part where the boy gets on the train to go see Santa Claus and so I asked her, "Where does Santa Clause live?"

Elisabeth got a very serious look on her face as she thought about the answer. Finally her eyes lit up and she piped up very solemly, "Jersusalem."

Um.... I'm thinking we have a little work to do of seperating the idea of Santa Clause versus Jesus. But on the other hand, I think she's actually listening to the stories that Grandma Ellinger, Jake and I have been teaching her.

UEA Weekend Part 2 (Hogle Zoo and the Mayan)

On the 17th of October, Jake and I took the kids to the Hogle Zoo. I have to admit, while I thought the zoo was fun... I've been to quite a few other zoos that are much better! For instance, in St. Louis the zoo is paid for entirely by the city and is FREE. Plus, it has a better layout and the animals were a little more perky. Then there is the San Diego Zoo, Washington DC Zoo... Utah needs to catch up with the times.

For a 3 year old the Hogle Zoo sufficed. Ellie really loved the monkeys and once again softies Mom and Dad let her walk out of the zoo with a brand new pet monkey that can attach around her back and her neck. I don't remember what she named it, but the monkey and Sparky also accompany her to bed every night. Nathan received a small stuffed giraffe and has loved playing with it.

We were so hot even though it was a nice cool day! At 3:00 we decided to leave the zoo and go to the Mayan in Jordan Landing. Since we got there to eat dinner before the main traffic of people came through, they put us at the bottom table in front of the water. Elisabeth thought it was so awesome to see the divers. I think it was a great one time experience; the food was a little pricier than it should have been. You know what though? Sometimes you just have to splurge and see something different. After all, we were having a good "tourist in your own backyard" vacation as a family. It was nice to just be able to get out together!

I'm thinking that next time we hit the zoo, its going to be to San Diego. Perhaps we'll make it part of our vacation in the spring...

Our UEA Weekend Part 1 (Discovery Gateway Children's Museum)

If you haven't ever been to the Children's Museum at the Gateway, it is time for you to give in and go! Jake and I originally wanted to go to Southern California with the rest of Utah and hang out at Disneyland but we got a little greedy and decided to spend our money on a backyard instead. Oh well, there's always next spring and Elisabeth didn't even know we were going to go so no huge loss there.

Jake and I decided that we really needed a mini vacation for our family though and UEA weekend was the perfect time to do it. So we took Elisabeth and Nathan to the Children's Museum on Thursday (October 16th) to hang out. It was so much fun, and crowded, with lots of building activities and Halloween crafts, and crowded, and an awesome exhibit on Intermountain Health Care's Life Flight program, and did I mention CROWDED? Elisabeth loved every minute of it. She had Jake wrapped around her little finger and together they explored the world of the Postal Worker. That's right... Ellie spent a solid hour interested in delivering the mail to the correct mail boxes. I was hoping she'd grow up to be a doctor or a nurse; but hey, being a government worker has its perks too if you don't mind dogs chasing after you!

Elisabeth was particularly interested in making her spider and also examining the human body figure that they had where kids could see the organs and put them where they are supposed to go. She loved seeing what Nathan's and her heart looked like. So there's hope she'll have a better career than her previous interest. We went to lunch at the food court and came back to spent a while playing with the balls. The coolest thing was that I met another heart mom while watching Ellie play. I had been feeding Nathan with his pump and she pointed to her little boy who was approximately 20 months (who barely looked 12 months) and said she'd had to do the same thing with him. We struck a great conversation and she told me that even though her little boy had barely learned to walk a couple of months ago, he was still making progress and trying to catch up! I love to see heart kids who are doing great! Softies as we are, we also let Elisabeth purchase "Sparky" our new stuffed dragon who we refer to as a dinosaur since Ellie's favorite book at the moment is "How Do Dinosaur's Say Good Night?". She's packed Sparky with her everywhere since we bought him.

After the Children's Museum, we took Ellie and Nathan to Barnes and Noble in Orem and let Ellie pick a couple of books that she'd like. Jake and I have such a soft spot for buying children's books and reading to the kids. We think that is one of the reasons that Elisabeth has such a great vocabulary at her young age. We browsed a little long at the bookstore and drove frantically home to watch BYU be decimated by TCU. Ah, the quest for perfection hit a major bump in the rode but we still love our BYU Cougars!


We had a great day!

Nathan's Sleep Study Results

Severe Obstructive Sleep Apnea

What a great way to say that my child is trying to breath at night but simply can't get enough air in his lungs to do the job. It is frightening in a child like Nathan because it can lead to pulmonary hypertension (where we already know that the pulmonary valve isn't going to hold out forever).


This is an excerpt from an article that talks about children with obstructive sleep apnea.

Children with Craniofacial Syndromes

JAMES CHAN, M.D., Cleveland Clinic Foundation, Cleveland, Ohio

JENNIFER C. EDMAN, M.D., Fairview Hospital, Cleveland, Ohio

PETER J. KOLTAI, M.D., Cleveland Clinic Foundation, Cleveland, Ohio

"OSA is more common in children with craniofacial syndromes. Children who have syndromes with craniosynostosis, such as Apert's syndrome, Crouzon's disease, Pfeiffer's syndrome, and Saethre-Chotzen syndrome; abnormalities of the skull base; and accompanying maxillary hypoplasia may have nasopharyngeal obstruction. Children with syndromes that involve micrognathia, such as Treacher Collins syndrome, Pierre Robin syndrome, and Goldenhar's syndrome, become obstructed at the hypopharyngeal level. In children with trisomy 21, a narrow upper airway combined with macroglossia and hypotonic musculature predisposes them to OSA.

The surgical management of craniofacial syndromes and OSA in children frequently requires more than standard adenotonsillectomy. Tracheotomy often is necessary. In children with midfacial hypoplasia, craniofacial advancement may be indicated. Glossopexy, mandibular distraction or advancement, or tongue suspension should be considered in patients with micrognathia.30"

Basically, because of Nathan's craniofacial abnormalities, he was at a serious increase risk of having apnea. This is in part of his micrognathia and cleft hard & soft palates. Since his jaw has already been advanced and his tonsils and adenoids are actually not that big (as well as an excellent defense against germs) we have opted not to have him operated on again. We've also decided that we don't want his tongue stitched down to his lip to keep it from blocking his airway. We had also discussed using a dental appliance to help with the apnea, however, Dr. Yamashiro (the orthodontist) feels that this is only particularly helpful to those with mild to moderate apnea. This would also be very difficult to keep in Nathan's mouth. With Nathan's specific needs, Dr. Daftery, Dr. Park, and I have decided that the BiPap would be the first measure we'd take in correcting this problem.

This is not a CPap Machine! Here is the difference:

What is a CPAP Machine?

"Continuous Positive Airway Pressure, also known as CPAP is a method of take positive pressure and applying it inside the throat in order to keep it from collapsing while you are sleeping. The mask is hooked up to this machine and it is worn over the nose and is connected to a CPAP pump. This pump then applies pressure to the throat through the mask in order to keep your throat from collapsing. While many people tend to stop using their mask within the first year, finding a mask that fits and feels comfortable can provide a solution to this problem. Usually these masks are made out of silicon and it then makes a seal over your nose. New gel filled masks are also available, and many people find them more comfortable

What is a BIPAP Machine?

The BIPAP machine is also a breathing machine designed to help patients breath easier. Not only does this machine help to push some air into the lungs, but it also helps to get more oxygen into the lungs by holding them open. This machine is adjustable and can sense the amount of pressure to use when exhaling and inhaling. The mask that goes along with this machine goes simply over the face, usually the mouth and nose, and creates a seal so the air pressure goes into your body.

When to Use These Masks

If you happen to have Obstructive Sleep Apnea, then more than likely you’ll want to use the CPAP machine, since it is great for people who deal with mild Obstructive Sleep Apnea. Most people who use these machines regularly see great improvement and it can be adjusted in such a way to make sure that normal breathing is restored while you are sleeping. However, a person who has severe problems with emphysema should never use a CPAP machine.

Many doctors actually use BIPAP machines for patients who are not totally able to breath on their own. This helps to get more oxygen in their blood. Of course BIPAP machines are also used to treat sleep apnea. This is usually a treatment for those who have more severe apnea problems or for those who have a hard time dealing with the CPAP machines. The machines also help to prevent snoring as well.

The Difference Between the Two

So, what is the real difference between CPAP ventilation masks and BIPAP ventilation masks? Well, the difference is actually quite simple. The CPAP machines apply continuous pressure to the airways and have only one level of pressure. However, the BIPAP machines have two different pressures. Higher amounts of pressure are applied when the patient is breathing in, while lower pressure is used when they are breathing out. Both machines do well for treating mild to moderate obstructive sleep apnea; however, the BIPAP machines are better for severe obstructive sleep apnea and also are effective in treating central sleep apnea as well.

So, as you can see, both types of machines can be extremely useful for treating sleep apnea. Many suffers of sleep apnea actually end up preferring the BIPAP machines, and it is easy to see why. Instead of dealing with that constant pressure that CPAP machines use, the pressure of the BIPAP machines vary, while you are inhaling and exhaling.

Jason R Davidson owns and operates http://www.cpapreview.net - CPAP Visit the site for more product reviews and information on how to get the best from your CPAP equipment check.


Nathan is trying to actually breathe on his own, but he isn't able to get enough air intake that a CPAP would not work for him. That's why he is using a BiPap machine instead.



This is Nathan with his BiPap machine. He actually did really well not trying to pull it off of his face. Poor kid is supposed to wear this every night indefinitely (with his helmet). He doesn't really like it, but once he's asleep its not that bad. Now if only the alarm would stop sounding every 5 minutes.....



Our newest member of our household: The BiPap Machine. Some people get pets; we could the latest and greatest home health care machines!