Thursday, March 31, 2011

Cardiololgy Update

On March 17th Nathan, Jake and I went to the extension of Primary Children's at Riverton for Nathan's annual cardiology visit. I LOVED going to Riverton because it was so much quieter, cleaner, and efficient! But I digress...

Before Nathan was able to see Dr. Cowley, he was tested for his oxygen saturations, had a blood pressure check, weight check, an EKG, and his first Echo where he was awake for the technician. I was a little nervous about the echo since it took about 50 minutes to complete and the child is required to hold absolutely still the whole time. That had potential to be a lot for a little 3 year old and even more headache for Mom and Dad! Nathan is such a trooper though and knows the drill. He weighed in at 28lbs (he had a bad week this past month where he was very sick and throwing up most of his food). His oxygen level was 93% which is EXCELLENT! I can't remember what his blood pressure was, but there wasn't any indication for concern.

The only problem we encountered with Nathan is that lately he is VERY into Superman (as you can see by the shirt that he wore that day.) He didn't want to take it off and it took more time convincing him to take his shirt off than it did to do the EKG! Once he had his shirt off though, the EKG went by very quickly with the expected results that a child in Nathan's stage of heart function should be at.

I was so nervous for the echo part of the visit, but it actually turned out to be pretty easy. Nathan was a little nervous as we laid him down on the bed, but once we had Toy Story on and the room was dark he zoned right into the movie and didn't pay attention to the cold gel all over his chest. Jake and I found watching the screen with the images of Nathan's heart very interesting. We could actually see where his pulmonary valve should be and the amount of backflow from the pulmonary artery as there is no valve there to push all of the blood to the lungs. It amazes me that a child can live his life without an essential part of his heart like that.

The results of the echo showed:

1. Severe pulmonary insuffiency
2. Moderate tricuspid valve reguritation
3. Mild mitral valve reguritation
4. No increase or decrease in the right ventrical from the last echo
5. Pulmonary hypertension

When we spoke with Dr. Cowley, he indicated there was no major changes from Nathan's last echo. That means that his heart has neither gotten better or worse. We know that Nathan's heart will not get better... we are buying time before there is enough evidence to support his right ventrical is in failure or getting too large and that he will need another open heart surgery to place a brand new pulmonary valve. Once a new valve is placed in Nathan, he will be having a valve replacements using the catheters through the groin every 3-10 years of his life. Jake and I are praying that in the next 3-5 years there will be enough advancement in the knowledge of pulmonary valve replacements that Nathan will not need a new valve put in using the traditional heart/lung bypass that occurs with open heart surgery. Nathan will also still need a tricuspid valve replaced in early adulthood.

We are very grateful for the news about Nathan's heart. It is also to our advantage that Nathan does not grow quickly which is causing less strain on his heart. Dr. Cowley was supersweet with Nathan. He drew a picture of Nathan and then placed him in a superman outfit. Nathan thought that was awesome and he is now referring to himself as Superman.

Yes, Nathan... you are our little Superman!

Monday, March 28, 2011

Debit Cards vs. Cash

Over the past couple of weeks Jake and I have decided that Elisabeth is old enough to work for an allowance. We are chinsy... she gets a measly $1.00 a week to be paid in nickels. We have been having problems in our house with having toys put away after kids are done playing, with not flushing the toilet, and being too sassy. Ellie earns $1.00 for doing her assigned chores for the week. It costs a nickel if Mom or Dad had to pick up a discarded toy on the floor and put it in "The Store of Mom and Dad". If Ellie wants the toy back she has to pay us a nickel. She is also notorious for not flushing the toilet. In order to break this disgusting habit it will now cost her a dime for every time she forgets. Being sassy or back talking about doing chores makes it so that she cannot earn her dollar at all. She knows the drill and has had to pay up Mom and Dad for the things she has forgotten to do. Thankfully she also realized that she has the money to do it and having the toys picked up and the toilet flushed has become much easier for her!

So after several weeks of this, Elisabeth has earned enough money to purchase some sidewalk chalk and a mini paint set she has had her eyes on for a while. She took her money jar into Target with me on Saturday and after we picked out her purchases, she was very concerned.

Ellie: "Mom, are you sure that Target takes nickels and dollar bills? I mean, you ALWAYS use your debit card. I don't think they take cash!"

Me: "Its ok. Cash is better than a debit card any day."

Ellie: "Ok..." (I could tell she didn't believe me at all).

So we got up to the checkout line and she proudly handed her purchases over to pay for them. She pulls out her money and proceeds to count by 5's the correct amount of change. She eyed the checker very closely and said, "Mom says you take cash; its all I have. I'm too young for a debit card!"

But something magical happened at that checkout line. Ellie learned the value of money and hard work. She used her math skills to figure out what she could afford to buy and didn't ask for anything more than what she could afford by herself. She used her math skills to count the appropriate amount of change by herself and even if the cashier couldn't believe that it took so long to help Ellie, Ellie and I could have cared less.

Maybe for a month that it how I should choose to do my grocery shopping... maybe I could "relearn" the art of buying only what I need and can afford. It gets to be too easy sometimes to just swipe the card without truly thinking about the amount of money I just spent. Strange that a 6 year old could teach me a lesson like that.

Tuesday, March 15, 2011

Some Food for Thought

I was reading a blog post this morning from a mother of a 3 year old boy who has cerebral palsy. It was very thought provoking and I thought that I would paraphrase what she said because it caused me as a mother to rethink what I should say about Nathan. I'm going to put this in my perspective as Nathan's mother.

When I tell people about Nathan or describe him to others, I typically mention that he has Pierre Robin, Tetralogy of Fallot, and a host of other serious birth defects. Not because this defines him, but I think it will help answer questions about him when they see he doesn't speak clearly, eat or doesn't do other things a typical three year old does. I tend to focus on the things he can't do when talking about him. The biggest reason I can come up with is because of MY OWN insecurities. I feel like if I tell people he had these birth defects up front, then we avoid any embarrassing situations. If I tell people he has had jaw surgery twice and a total of 18 surgeries in his mouth and face, I don't have to explain why he can't and doesn't want to eat. If I tell people he has these problems, I don't have to step out of my comfort zone. But if I continue telling everyone he has Pierre Robin and Tetrology of Fallot as a basic introduction, I'm skipping over the most wonderful and amazing and cheerful and energetic and happy-go-lucky little boy I've ever met. I'm still working on it, but this post has definitely challenged me to find a way to describe Nathan in a positive light, leaving out everything he "can't" do.

So here's what Nathan can do:

Nathan is the kind of brother every kid should have. When Ellie is hurt he is the first to tell us even if he was the one who caused the problem. He immediately runs to give kisses and hugs to make things all better.

Nathan is great at volunteering and saying prayers (with help) when we pray as a family. He is ALWAYS the first to volunteer.

Nathan is a great singer. He has mastered Twinkle, Twinkle Little Star, Old MacDonald, and Head, Shoulders, Knees and Toes. His articulation could be better, but he loves to express himself through music and because of this we have found this to be a great outlet to teach him both in church, school, and therapy sessions.

Nathan still has times when he needs to go to Time Out. However, he will always stay in place without kicking, screaming, or crying. He is always quick to say he was sorry for what he did.

Nathan has a great imagination and loves to play with anything. His current favorites are having the IKEA plastic forks, knives, and spoons talk to each other and to dance around the table.

Nathan loves to play catch with footballs and baseballs. He is getting much better at kicking soccer balls as well. He is developing into a normal 3 year old boy right before our eyes!

I don't introduce Elisabeth as being exceptionally stubborn and strong willed so why should I not introduce Nathan in that same positive light?

So - this is Nathan. Nathan is a typical 3 year old little boy who loves to sing, play with footballs, and is extremely kind hearted. He's the brother that every child should have. He will be a great big brother in a couple of months!

Monday, March 14, 2011

Waiting for the Bus to Come

Nathan started preschool the Friday after his third birthday in January. The first day was a little hard for him, but he loves going to school now. Nebo School District started a "Baby 3" class for preschool where the new 3 year old child attends school with one of his parents on Fridays for an hour and a half. Since Nathan had the first birthday of the year, he didn't have any classmates for a month. Jake and I were very concerned that he needed to be with "model" peers and so we stated that he needed to be in preschool at least 2 days a week. I felt as if we were having to negotiate his education, but a least Nathan was able to be put in another class with other children who are eating and speaking better than he is.

Nathan's team of teachers are really nice and I am impressed with what they are doing to help him in school. I am disappointed with the feeding therapy that is being given by the speech therapist and will be asking for a referral for an occupational therapist to come and work with Nathan as well. A portion of Nathan's Individual Education Plan states that he will eat and drink so much by next year and so far the speech therapist has left the feeding completely up to me. Then she had the gall to say that she has so much time allotted to Nathan and did I want him to have more speech therapy or more feeding therapy? That's why I want another therapist... Nathan needs both equally but apparently even though its in his IEP its no big deal to her. I understand our responsibilities for working with Nathan at home. We have been working very hard eating for 3 years. That included weekly visits from the occupational therapist from early intervention, bi weekly feeding therapy from Orem Pediatric Rehab, quarterly evaluations from the Dysphagia Clinic at Primary Children's... and daily home work with Nathan. We have put so much into this and we are very invested as a family to help him. He has an opportunity to get help at school and the mama bear in me is angry that his therapist is acting the way that she is. Sigh. I am going to be speaking with Nathan's teacher this week about getting the referral so we'll see how that goes.

Nathan's very favorite part of going to school is being able to ride the bus on Thursdays. He loves to wait for it and every Thursday when I come home from work when I ask about school he tells me about riding the school bus, or as he pronounces it ("Cool Bus"). I think Elisabeth is a litle jealous that she isn't able to ride the bus to school, but when I remind her that she is able to go to school with her Dad and that Nathan doesn't she usually quiets right back down.

Thursday, March 10, 2011

Crazy Hair Day

Yesterday was crazy hair day at school as part of Spirit Week. Ellie and Jake have both really gotten into in the "spirit" of things. Nicole was super sweet and did Ellie's hair yesterday. It took her almost an hour to do it, but I think it turned out awesome! Jake grew out his hair really long and then he had Nicole give him a Mohawk. I cringe looking at the Mohawk because he wants to keep it till Friday. Friday at school is Decade Dress-Up. He wants to be a punk from the 1980's... only Jake!

Ellie is getting to the awkward stage of picture taking. Even when she looks at the camera, she always squints or pulls some funny face. It doesn't help either that he teeth are coming in and falling out. I hope that this stage of her doesn't last long because she is a really cute kid with a great smile when she decides to show it off!

Wednesday, March 9, 2011

Elisabeth's 6th Birthday

Elisabeth - 1 week old

1 Year Old

2 Years Old

3 Years Old

4 Years Old

5 Years Old

I can't believe that Elisabeth is already 6 years old! Where did the time go? I vividly remember the day she was born... there was a huge snowstorm that morning and I was worried that we wouldn't make it to the hospital safely or that our families wouldn't make it either! But nothing could hold back 2 excited grandmas and they were both there.

Elisabeth was born with a big personality. Its not necessarily a bad thing - her biggest weakness is also her biggest strength in many regards. Because she is a forward thinker I believe it has also be easier for her to accept Nathan and to also help mold him into the cute little guy that he is today. She doesn't hold back with him and encourages him to eat and to play like any other normal kid. Ellie has a very strong will, but that has also has helped her do very well in school because she wants to do and be the best at everything she can.

Elisabeth at 6 Years Old:
1. Loves kindergarten and is on a D-E level of reading.
2. On the Measure of Academic Progress Test at her school tnat she recently took, she scored in the 87% nationally for her math skills.
3. Her job at home is to remind us to read scriptures nightly as a family. She is reading out of the Book of Mormon and able to read and recognize a great majority of the words.
4. She loves being in the 500 Club at school (where the student reads 500 minutes every month). It is her goal to be the first one in her class to make it every month.
5. She is VERY EXCITED to be getting a sister in a couple of months and loves to constantly remind me of how big my stomach is getting. I wish she wasn't so eager to remind me of my growing pains!
6. Her favorite food is spaghetti. The odd thing is she won't eat it with the spaghetti sauce. Just a little cheese on the top...
7. Her favorite activity is taking cooking lessons with her Grandma Ellinger. She looks forward to just spending time with her and is actually doing very well in learning how to cook. It has been the best Christmas present ever for her.
8. She is learning how to play the piano and is doing a great job.
9. She has lost 4 teeth and another 2 should be coming out in the next couple of months.
10. She loves to hang out with her friends and especially to play outside riding her bike or playing with Addison. She loves that it is almost springtime so she can be outside more.

For Elisabeth's 6th birthday we had a very low key birthday party for her. Libby, Mallory, Shawn, Kristin, and Kathleen came to celebrate with us. Grandma and Grandpa Ellinger were at a conference that weekend and weren't able to make it. We had the good ol' cake and ice cream. Kristin made Ellie's birthday cake and did a great job with it. The birthday party was held the Saturday before her birthday and so we decided that Libby and Mallory could sleep over as part of Ellie's party. The girls had such a fun time together!

On Elisabeth's actual birthday on the 15th of February we invited Grandma, Grandpa and Kathleen to come over and have dinner with us. Ellie loves salmon too and so we had salmon, asparagus and rice for dinner. Afterwards Ellie and Grandma blew out birthday candles together since they share the same birthday. Elisabeth loves that she has that in common with her Grandma.

On the day of Elisabeth's birthday party we had raspberry crystal light. Ellie loves that stuff which is why in every picture of her she has a red ring around her mouth. She can be such a silly kid sometimes!

Jake and I are grateful to have Elisabeth in our lives. She is a great kid and we couldn't imagine what life would be like without her!

Wednesday, March 2, 2011

Fetal Echo

I went up to Riverton Hospital to see Dr. Su, one of the pediatric cardiologists for Primary Childrens. Even though the baby did not appear to have any birth defects, the perinatologist wanted a fetal echo done to verify if there would be any problems. I wasn't really worried going into it and had a feeling of peace. Sure enough the feeling of peace wasn't for naught, and our little girl will be born heart healthy. What a relief! Now I can just sit back and enjoy the swelling and normal aches and pains of being pregnant...

Nathan's 3rd Birthday - January 22nd

Happy Birthday little guy! We celebrated Nathan's 3rd birthday with a very small party at our house. Nathan was very clear that he wanted a Buzz Lightyear birthday cake, so Aunt Kristin made the cake and cupcakes and we supplied the ice cream. The problem with giving Nathan a Buzz cake is that he didn't want to cut it or eat it. He did love his mint chocolate chip ice cream and had fun licking it and trying to feed himself with his own spoon. Nathan's very favorite part of the party was getting a brand new bike. I just wish that his birthday was a little closer to the warmer weather months so that he could get more use out of it.

I really didn't want Nathan's 3rd birthday to come. It brought with it the end of early intervention and the start of preschool. I will have to post some pictures of a few of Nathan's therapists that did so much to help him!

I'm really pleased with the progress that Nathan is making. He has come so far in the past three years. I just have to keep reminding myself that Nathan's Pierre Robin just adds to the normal oral aversion that many heart babies are prone to. He is making progress but typically children like Nathan need to set their own time table. Its going to be a L.O.N.G. time before Nathan no longer needs his g-tube. We just need to keep giving him lots of positive eating experiences and to work very patiently with him. I still feel very fortunate that we are just struggling with eating, frustrating as that can be sometimes. What a blessing it has been to have so much support from family, doctors, therapists, babysitters, and above all a loving Heavenly Father.

Here is Nathan's stats at 3 years old:

Weight: 29lbs 1 oz.
Height: 36 inches