Nathan, Baseball and Overall Development

Nathan has been fixated lately on baseball, which is strange since Jake hasn't really watched much of it this summer. He walks around the house with Jake's Boston Red Sox hat on his head and usually with a ball in his hand and a red child's bat in the other.



This is the "UH OH, Mom caught me and I'm a deadman for knocking everything all over with my bat!"



This is what Nathan usually looks like walking around the house. He is such a little ball of energy who is starting to stick up for himself a little bit more. Boy, if Ellie gets in his way she has to watch out! He starts growling at her in a deep voice saying... ELLLLLLLLLEEEEEEEEE. Then in response she justs starts laughing at him and then runs before she gets in trouble with us.

Here is his current stats at 33 months:

Weight 26lbs even (he lost 3/4 a pound last month)
Height: 34 1/2 inches
Speech: 22 month old
Gross Motor: 24 month old

Nathan is going to be tested on November 12th by Nebo School district to see if he qualifies for services that could be provided by the preschool. They do not take into account that he still does not eat orally because that does not meet an "educational" goal. To which I think that's a bunch of bunk because it will affect his academics if he goes to school in first grade and is teased for having a g-tube. We are doing all we can to help him but its only been 5 months since we have been able to really make progress with him and in many ways his oral skills are at that of a newborn. Articulation is going to be Nathan's biggest hurdle to get over in the next little while, but that is mostly due to the Pierre Robin and cleft palate.

Overall Nathan is doing awesome. Maybe someday he will be a professional ball player (just not for the Angels or the Yankees :).

Dysphagia Clinic at Primary Children's

Nathan has been seen by the Dysphagia Clinic at Primary Children's since he was 5 months old. Following his open heart surgery Nathan had a very difficult time for a couple of months having too much in his stomach and though he was drinking about an ounce with his cleft palate nurser (bottle), he completely quit and wouldn't have anything to do with oral stimulation. He was refluxing and throwing up several times a day through his nissen and he was in a lot of pain during feedings.

Dr. Molly O'Gorman (Dr. Molly as she calls herself), took Nathan right under her wing. She has been very frank with us about Nathan's problems, but what I really love about her is that she is a mother. She speaks to me from a Mother to Mother standpoint and makes me feel informed and empowered about Nathan's medical decisions. She is a rare jewel of a doctor and I hold her in the same high regards as Dr. Park, Nathan's ENT.

From a g-tube standpoint Nathan is doing quite well. We are going to try to change his G-tube brand to see if it helps the leakage/drainage problem we have been having. With Nathan not having to work so hard to breathe and his heart function getting better they actually had to REDUCE his calories! He is gaining a little too well for his heart to keep up with the work. He is now taking 5 cans of Nutren Jr. a day which totals to be 1200 calories a day. Nathan is weighing in a a whopping 26 lbs and is just shy of 35 inches tall. That puts him in the 5 percentile for his weight and 8 percentile for his height. His overall weight/height ratio (which is what the doctors actually look at to determine correct weight for the child) is 98%. That is Nathan's BEST EVER figure!)

From an eating standpoint... well... yeah. Nathan did chomp down on celery and peaches for Helene (the feeding therapist). He also put Nutella in his mouth and swallowed a little bit. We had considered sending Nathan to Kennedy Krieger or Hershey Penn State for intensive feeding therapy. Both the doctors cautioned that we would not see the results that we hope for because Nathan's feeding problem does not stem from a mental/emotional disorder. It is from SERIOUS physical impairments. She cannot recall a child in her clinic who has had 18 operations alone in their facial area. Only 1 other child at Primary's has had jaw surgery twice for Nathan's diagnosis. They are VERY IMPRESSED with the feeding abilities that Nathan has and pointed out that the muscles we use to eat with have been cut through MANY times on Nathan and they are extremely weak. Asking him to go through that kind of therapy would be like asking me to run a marathon a month after having a c-section. I wouldn't ask it of myself and so I shouldn't expect it of my child. Helene gave some good feeding ideas and then said that Nathan needs to be seen 1x per week from both Early Intervention and the Orem Pediatric Rehab Center.

I wish that Nathan didn't have this G-tube and would just eat. The lessons we've learned as a family in regards to patience is phenomenal! I am grateful, though, that for the first time in 31 months Nathan is STABLE and no more immediate surgical intervention is required. We are very fortunate that feeding is our big issue.




Dr. Molly and Nathan



Helene Taylor (Feeding Therapist) and Nathan



Gotta love the chubby cheeks!



Nathan LOVES his Nacho Cheese Doritos. He won't eat them, but he loves to lick them. He asks for his CHIPS all of the time!

Its That Time of Year Again

Growing up my mother made it a point to can every item in our garden that she possibly could. As a kid I HATED IT. Well, except for the part of eating the yummy bottled peaches. I disliked snapping beans, HATED bottling tomatoes, and the worst was making grape juice. As a mother now I see why my mom took the time to do those things. It was definitely cheaper to can the items from your garden than to buy them in the store... but there were even more important lessons that she was teaching us.

1. The effort of what you put into something is exactly what you get out of it. We worked hard on keeping that garden producing and it was satisfying seeing what we could do. I remember so many late nights with Janice taking our "water irrigation turn" at 12:00 or 2:00 in the morning. I have fond memories of that time spent with Janice and my brother Brian.

2. We learned self reliance.

3. I am convinced now that Mom could have easily done a better job than us if she had just done the work of bottling by herself. I believe that not only did she have us help for the reasons listed above, but because it was a way to spend some quality time with her where we could just talk about whatever and she knew that she had our attention for a 4-6 hour time span.


Julie Beck couldn't have said it better in her Mother's Who Know talk:

Mothers Who Know Are Nurturers
Mothers who know are nurturers. This is their special assignment and role under the plan of happiness.5 To nurture means to cultivate, care for, and make grow. Therefore, mothers who know create a climate for spiritual and temporal growth in their homes. Another word for nurturing is homemaking. Homemaking includes cooking, washing clothes and dishes, and keeping an orderly home. Home is where women have the most power and influence; therefore, Latter-day Saint women should be the best homemakers in the world. Working beside children in homemaking tasks creates opportunities to teach and model qualities children should emulate. Nurturing mothers are knowledgeable, but all the education women attain will avail them nothing if they do not have the skill to make a home that creates a climate for spiritual growth. Growth happens best in a "house of order," and women should pattern their homes after the Lord's house (see D&C 109). Nurturing requires organization, patience, love, and work. Helping growth occur through nurturing is truly a powerful and influential role bestowed on women.

Mothers Who Know Are Teachers
Mothers who know are always teachers. Since they are not babysitters, they are never off duty. A well-taught friend told me that he did not learn anything at church that he had not already learned at home. His parents used family scripture study, prayer, family home evening, mealtimes, and other gatherings to teach. Think of the power of our future missionary force if mothers considered their homes as a pre–missionary training center. Then the doctrines of the gospel taught in the MTC would be a review and not a revelation. That is influence; that is power.


I know that it was very difficult for my mother to raise 2 daughters (after dealing with 7 other children) by herself after my dad passed away. But she kept at it with faith and diligence. I am selfish in wanting my mom to be here still to keep teaching me, but I know that she is happy with her eternal sweetheart and my sister.

I want to be the kind of mom that I had. The summer after Elisabeth was born mom "retaught" me the art of canning. Since then Jake and I have made it a tradition every year to make jam, bottle tomatoes, bottle spaghetti sauce, bottle salsa... you name it and we like to try it. If I get brave enough I might even make apple butter with the help of my best friend Tammy. (This is your warning Tammy!)

So here is my first attempt at teaching Ellie how to make spaghetti sauce. So far in the past week we have made 41 bottles of spaghetti sauce. I think this weekend we will be brave and do salsa...

Ellie had such a good time. She is a great helper in the kitchen when it comes to cooking. She is so much like her dad... good cook but when its time to clean up she takes off running!

Only Ellie....

Though Elisabeth just adores Princess things such as the jewelry, stories, and bracelets... I believe that she is really more of a Tom Boy at heart. This summer she has been practicing riding her bike without holding on with her hands (she ditched the training wheels when she was 4!), doing "tricks" on her scooter, and practicing jumping/diving in the swimming pool. Elisabeth has taken 3 sessions of swimming this summer and is proficient at swimming by herself across the swimming pool at our clubhouse. She is a pretty daring kid who isn't afraid to have some good ol' fashioned fun.

Last Thursday after swimming lessons our niece Halee took her swimming at the clubhouse. Ellie was dying to practice jumping in the swimming pool and then after floating to the top she would swim across the pool. She ran to jump in the pool, lost her footing, and cut her chin open. Blood started gushing everywhere and Halee freaked out!

We took Elisabeth to the pediatrician who decided that because the cut was so straight that he would prefer to glue her chin back together rather than to stitch it back together. She was still freaking out quite a bit and so Jake bribed her with some Cold Stone ice cream. That seemed to help her quite a bit!

This is the second time Ellie has cut herself on her face. We know that with some of the stunts that she pulls it will only be a matter of time before she breaks a bone!

The pictures below were taken after her chin had been glued back together. I couldn't stomach the "before" pictures so I didn't post them!

First Day of Kindergarten

Today was Elisabeth's first day of Kindergarten. She is going to Reagan Academy and has Mrs. Miller as her teacher. The school has a uniform policy (hence why she looks a little more formal than a normal kid). She changed her mind 3 different times yesterday as to what she was going to wear and which bow she wanted in her hair. The school did a 3 week stint of "pre-kindergarten" where the kids went to school without the rest of the other grades there. Ellie did well with that and realized that school wouldn't be that scary!

It seems a little wierd to me to be sending her off to school. Ellie is my first experience with what school is going to be like from a parent's perspective. Up until now I got to choose her friends and the people she surrounded herself with. Now.... I just hope that she can make friends with GOOD kids - like the friends that I had growing up. I'm just glad that Jake works down the hall as the middle school science teacher.

Maybe the reality isn't that I'm scared for what awaits Ellie as for what awaits me as she grows up. (And possibly that 30 is a little over 3 months away!).



(She came out a little (big?) ball of fire at 9lbs 11 oz kicking and screaming and letting her presence be known). She's no longer a baby, but man - she likes to make her presence known still!

Goodbye...

And Good Riddance!!!





Nathan passed his sleep study test with flying colors!!! He does hypo ventilate, but the obstruction is gone and the sleep doctor that read and interpreted the test said that he felt that no further surgical intervention was needed at this time.


Yeah!!!!

The pulmonologist did say that anytime Nathan had a surgery he should be very carefully monitored as his airway is not normal and is more prone to collapse. Hopefully he won't need any more surgical intervention for other body parts for quite some time.

Tonight we are going to celebrate!

Another Sleep Study...

The sad thing is that the picture of Nathan tells a little too much about how he knew this was his 4th sleep study! Its the "I can't believe you are putting me through this again!" putout look! He was such a trooper getting the probes on. He didn't fight it or anything. He just sat and played with Woody from Toy Story and watched "Cars".







Last night I took Nathan up to Primary Children's for hopefully our last sleep study in a while. This study was to check the status of his severe obstructive sleep apnea post mandibular distraction.

I hate that they call it "sleep study". Neither one of us slept great... but the good news is that Nathan did not need oxygen at all last night! That is such a big step forward for this little guy. They said his oxygen sats were around 88-90 which is awesome for Nathan at night! If a child drops below 85 then they are required to put oxygen on him. I hope that this is an indication of good things to come as we won't find out the results of the study for another 2-3 weeks. I have an appointment with Dr. Park on August 25th to discuss the results if we don't recieve a phone call from him before then.

Wish us luck that the jaw problem is over with for a while! With the jaw problems out of the way it would do a world of wonder for his heart and particularly his pulmonary hypertension.

The Museum of Science and Industry

The day after Jake came to Chicago, we decided to go see the Museum of Science and Industry. We thought the science museum in Seattle was awesome; this place made the one in Seattle look like it was put together by amateurs. Jake, the textbook version of what a science teacher should be, was in seventh heaven!

There were so many things to do and see in this place. My favorites were the sections on the human body and the weather which included the transfer of energy. The human body section should what the body parts looked like without the skin and muscles. It also had a human heart that had been donated. There was a section that showed the growth of babies in the mother's womb. All of the babies had passed away at different gestational ages and had been preserved for people to see what forms at what stage during a pregnancy. It was very interesting to see.

My other favorite part was the wing specializing in weather. They had a movie on how lightening is created and then had a demonstration on the ceiling above us. Ellie and Nathan LOVED it. We could have spent days at that place. We visited this place on the first Thursday we were there and had previously decided that we would go to Hannibal and Nauvoo on the weekend. If we ever got to go to Chicago again, I would make that the top priority of places to see.

Tap, Tap Tap.......

Does this blog actually still function?

On some level it does. I should do better, but oh well.


For work I had to spend 2 weeks in June auditing companies in Chicago. Jake and I figured that he would not enjoy taking care of the kids for 2 weeks by himself so we opted to make this our "family vacation" for the year. We couldn't afford to fly, so yes... Kathleen (Jake's sister) and I braved the roads and the kids for a 2 1/2 day drive I hope not to repeat for quite some time. The kids were actually very good travelers, but 2 days in a car can be LONG. Jake's sister came out with us to help tend the kids because Jake's work decided that he would have to attend a work retreat for the first few days I was supposed to spend working in Chicago.

Before Jake flew out from Utah to join us, Kath and I decided we had to do a few fun things that Jake wouldn't want to do. The main event was the American Girls Doll Place. Wow! The dolls were incredible! I never had one when I was a girl, but I wish that I had. I bought Ellie the friend of Kit Kitredge (Ruthie) I believe. She has loved that doll and taken exceptional care of her since bringing her home. The store also had a doll salon, a doll hospital, and room for tea parties. It was AMAZING! Ellie has named her doll Emma Lynn Ellinger so it would be the same initials as her.

After the American Girl store we hopped on a bus and visited the Adler Planetarium. It is located right on the shore to the lake. It had such a fun children's area to play in and the kids had a great time. Who knows? Maybe someday one of them will be an astronaut or fly to the moon!

Endocrinology, Cardiology and Genetics

(I just love Dr. Cowley!)



(Nathan having his EKG)





We have had such a busy April at our house with the kids and their appointments!

April 7 - Dysphagia Clinic
April 8 - Nathan's distractor started coming out of his face
April 12 - Nathan's surgery to get his distractors out for good!
April 13 - Orem Pediatric Rehab feeding therapy for Nathan
April 14 - Endocrinology appt and Cardiology appt
April 15 - Ellie presurgery class at PCMC
April 20 - Genetics appt with Dr. Viskochil
April 22 - Ellie's tonsilectomy
April 26 - Nathan IFSP - Early Intervention, speech therapy, occupational therapy
April 28 - Nathan's home health care nurse comes for assessment and to check for overall growth and development.

Plus - every Friday we have the early intervention feeding therapist come and work with Nathan on eating.

My goal is 1 month without a doctor appt for anyone. JUST ONE MONTH!



Nathan was seen by the endocrinologist at Primary's to check for the way Nathan's body processes calcium and vitamins since he has had two cleft palate prosthesis fall out as well as both sides of the jaw distractors from this last surgery. All they came back with is that Nathan is Nathan and he is only low in Vitamin D, but not insufficient enough to cause that severe of a problem. I'll take that over Ricketts any day.

However, before they could rule Ricketts out that had to have radiology perform a full skeletal x-ray. I will never complain over a chest x-ray again. Nathan screamed at the top of his lungs for 57 minutes straight. I felt so bad for him!

Our cardiology appointment was a couple of minutes later and so we had the EKG done and went through more thoroughly the results of the last echo.

The results of the echo showed:

1. An increase in the size of the left ventricle.
2. Triscuspid valve leakage - moderate
3. Mitral valve leakage - mild
4. Pulmonary Hypertension
5. VSD patch shows mild leakage
6. Right overriding aortic arch
7. Severe pulmonary insufficiency

The happy news is that with the tricuspid valve leaking the cardiologist is able to get a pretty good estimate of the pressures in Nathan's heart without having to send him in for a heart cath. I was under the impression that Nathan's pulmonary valve was present but had just been widened to allow for more blood flow through the pulmonary arteries. Dr. Cowley said he was surprised that Nathan didn't need the BT shunt. When the surgeon got in to do the "repair" he actually had to cut the valve out for Nathan's blood to have adequate flow to get through to the lungs. There is some trace of the valve tissue there, but no valve that is opening and closing. This means that Nathan is not a candidate for the pulmonary valve replacements that are being done by going through the groin. Hopefully as time goes on and more is known about those valve replacements that Nathan could take that route. I guess that the best part of Nathan being so little and slow to gain weight is that it allows for more time until he needs to have that valve replaced. Dr. Cowley also indicated that in early adulthood Nathan will likely need something done about his tricupsid valve.

Best news is that Nathan is as heart healthy at this point as he is ever going to get. That is music to my ears!

I also took Nathan on the 20th of April to see Dr. Viskochil, Geneticist. With Nathan's very long, complicated medical history he is very surprised that Nathan is doing as well as he is. They are still unable to name a syndrome that Nathan has because of how smart that little boy is. He has a lot of birth defects and nuances about him that make him his own special little person. They have no idea of the cause of these defects and can only give a "statistical best guess" about the probability of having another child like Nathan. Their guess is 3-25% chance. That is just a guess though because they cannot name where the deletion came on what chromosome. We really are only interested in finding a syndrome so that we can be proactive in Nathan's medical care and to help with any learning disabilities that may be known to present itself in one of those syndromes.

I am very grateful that Nathan is doing so well. We have a long way to go, but look at how far this child has come!

Ellie's Tonsilectomy 04/22/2010

What would the Ellinger Family be known for if it wasn't for surgery? So - Ellie got to join in too. Poor kid had tonsils that were equal to Nathan's and she was having a hard time breathing at night. Instead of opting to try to help it with some meds, we opted just to have the surgery and be done. We've maxed our out of pocket this year (thanks Jake & Nathan!) and so we felt it was a good decision to have it done for Ellie.

She was such a trooper about it! She DID NOT WANT TO GET DRESSED! Grandma and I had to coax her into her clothes, but after that she seemed to do ok all things considered. Dr. Park was so gentle with her and the anesthesiologist was more than happy to give her some versed (the happy forget it all drug!). Ellie was so mesmerized by the toys that they gave her that it didn't bother her to go into surgery.

She did really well the first two days after surgery. Then day 3-9 were just AWFUL, especially at night. Now she is as good as new. We're proud of how brave she was! As a side note - she has only had 1 accident at night after having her tonsils out. That's amazing for that girl!

So yes, EVERY Ellinger (Jake, Ellie, Nathan, and myself) has had surgery in the last year. We should probably find a new way to bond as a family.

Going Going Gone!

The distractors have come off and now Nathan has REALLY taken off! Nathan's distractors were removed on April 12th. The weekend before they were taken out, the distractor that wasn't replaced on the 9th of March started dangling from Nathan's cheek like the first set! I was in California at a wedding when that happened and so it was really great of Jake to sit and hold Nathan all weekend and to watch Mickey Mouse Clubhouse with him to keep him from having another set completely fall out.

Jake and I are really pleased at Nathan's progress and recovery from this. It was a big surgery for such a little guy to go through, but as promised in a blessing from an apostle "he will have vigor and energy to complete his mission in life". He has truly started to show that. He was such a happy little camper after surgery to get those out! He just kept signing and saying "All gone, all gone!"

Yes Nathan, THEY ARE ALL GONE!!!