Thursday, September 6, 2012

Another Cleft Palate Surgery

This morning I woke up at 4:30 a.m. to get ready to take Nathan to Primary Children's Medical Center to have Dr. Park perform another cleft palate surgery. There was a lot of thought put into Nathan having this operation. All of the doctors in in the craniofacial team said that Nathan needed it done. Not one of them could agree on the timing. Up to this point in Nathan's surgical history, the choice of when was never given. Its always been he needs this and he needs it now! The concern with this operation is that with all of the work we have put into giving Nathan an optimal airway, this could have set us back. Nathan has such a small mouth and jaw in comparison to what he should have. The flap that exists in everyone to close off their nose when they speak is missing in Nathan. He needs that flap! However, he is not and probably never would be a candidate for the operation to help him. So, we improvised... and had to beg Dr. Park to do this for him. Typically children like Nathan do not have this operation until they are 6 or 7. But Nathan is not a typical little boy. He's had several nasal endoscopies this year and did not cry or figit when the camera was stuck down his nose. He is a mature little boy with a lot to say and yet everyone has such a difficult time understanding him. This operation should help immensely. Even more than that - we want to be done for quite some time before Nathan needs anymore operations in his mouth. We are desperate for him to eat through his mouth. We have the potential to be done for a few years till his next open heart surgery. This break could make a significant difference to Nathan! The surgery is done and it went well. The only issue Nathan is having is that when he falls asleep his airway compresses and his oxygen levels dip down to the requirement of needing oxygen. His poor mouth is swollen and he is having a difficult time speaking. But he is in good spirits. He will be staying overnight for observation and Jake is going to stay here with him. This is going to be the start of good things to come!

Tuesday, September 4, 2012

A Push Forward

I took Nathan to his preschool open house during lunch today. He was so excited to see his teacher at Cherry Creek again. We adore Mrs. Foster and Natalie, her technician. Natalie has been WONDERFUL with Nathan and he loves her so much! I'm excited for the progress that I think will happen at school this year for Nathan. He's having a cleft palate surgery on Thursday. We are a little nervous, but happy to be doing something more for his speech. You wouldn't think that a cleft palate surgery would be a big deal, especially when compared to open heart surgery. I remember Nathan coding in the Intensive Care Unit after his tonsilectomy. This surgery has the potential to go really right or really wrong. But the big push forward really came this afternoon. I sent the necessary documentation to "Our Children's House" in Dallas, TX to request Nathan be seen in a more intensive feeding clinic there. They are comparable to Primary Children's, but offer a more comprehensive feeding therapy. If Nathan is accepted for an evaluation and is seen as a patient whom can be helped, I will be taking off 1-2 months of my life to take Nathan to Texas to teach him how to eat. We have also looked into the Hershey Penn State program. I'm feeling scared - mostly for the what-ifs. I want Nathan to succeed so badly and we have been at this for 4 1/2 years. This is new territory even for us; and a costly one. Our insurance will likely not pay - but Nathan is in desperate need for this care. We'll know in a few days a little more information.

Wednesday, August 29, 2012

"Dad, You're Fired!"

In my way of trying to keep up with the kids and the things they do and say I have to post this about Nathan: He fired Jake as his dad, which is actually kind of funny since Nathan loves Jake fiercely! I had gone visiting teaching one evening last week during Nathan's regular g-tube feeding. Jake, bless his heart, was trying to take care Emmaline and Ellie's dinners as well as keeping the house under control. He had fed the kids at the table (which Nathan worked on his eating too at the table) but Jake completely forgot to tube feed Nathan. After I came home we all sat down on the couch together to watch "Anerica's Got Talent". At 8:30 we told the kids it was time for bed. Nathan exclaimed, "But I'm HUNGRY!" At first I didn't believe him, but then the mom in me started to wonder... was he fed? Sure enough when I asked Jake about it he sheepishly admitted that he had forgotten. Nathan was standing right next to me and exclaimed "Dad, You're Fired!" Silly boy. As soon as Jake fed him the next time he became "unfired". As a mother, I love watching the interaction between Jake and Nathan. Its fun to see them play together and to have such a good relationship. I love to see how Jake is teaching Nathan to treat his sisters and I with respect. I love to see them get excited about football together. I love that Jake sees Nathan beyond his inabilities. I worried that Jake would feel hurt that his only little boy wouldn't be able to do the things like playing football that Jake would want him to. I should feel stupid for worrying about that because Jake has never thought of Nathan in that way at all. Jake really is the perfect Dad for Nathan.

Monday, August 27, 2012

Too Much....

Lately Nathan has been doing much better on his eating skills. This is of course all relative to where he started. Much better is generally taking 4-5 bites of food and swallowing about half of what goes in his mouth. He has finally figured out this summer that eating is as much social as it is for nutrition. This weekend was an exceptional weekend for Nathan in regards to eating. It actually started last weekend when I gave him a cup of yoplait yogurt and told him if he ate the whole thing he could choose the movie to watch as a family. It wasn't perfect, but in the time it took our family to eat dinner, Nathan had tried to eat the whole yogurt. He was so excited to be able to choose the movie! This weekend Ellie had a soccer game on Saturday morning. She had done very well at her first go at being the goalie so as a reward, we took the kids to get a snow cone. Nathan absolutely loves the tiger's blood flavor so Jake bought him a child sized cone (of the soft shaved ice) and Nathan ate about a cup worth. On Sunday evening we made pumpkin chocolate chip cookies. Now if there is one food that Nathan will eat consistently its chocolate! The heavenly smell of the fresh baked cookies were too much for him so he took a cookie and worked on eating it while we watched "Secretariate" as a family. Nathan was an ooey-gooey mess at the end of it, but he had managed to eat one small cookie and LOVED IT! He came over to me to show me the evidence (which was quite noticeable since it was all over his face and hands). When I asked him how much he ate, he rolled his eyes and me and said "Too Much!" Too much Buddy? At 31 pounds and 38 inches you are the only one in our family who can afford to pile it in! We are so excited for Nathan's progress in eating. Baby steps... that's what this process is. We are looking into sending Nathan to Baylor for an intensive feeding clinic for which the child would be hospitalized for aprox 4-8 weeks. That would be a huge sacrifice for our family, but we want Nathan to be able to get rid of his feeding tube. It may take a couple of years, but we have to try and encourage him the best we can. We have one more year until Nathan reaches Kindergarten and we want his peers to accept him as normal. Sigh. Sometimes this whole process is frustrating! But we will get there and everything will be ok.

Monday, August 20, 2012

The I can't believe I've neglected my blog for a year....

I can’t believe it’s been a year since I’ve written on this blog. Sure, I have semi-regularly stalked other people’s blogs, but in typical Stephanie style I have neglected my own. And unfortunately, it was my journal. I am determined to not necessarily play catch up, but I do want to keep up! Today was the first day of school for Elisabeth as a 2nd Grader. She has been growing up so fast and the things that she says and does just floor me sometimes. She is a Tomboy at heart but she does love her American Girl dolls and to get dressed up in skirts and dresses. I find it funny that since starting school, she has always worn a dress/skirt on the first day of school. This year for school she wanted her hair all curled up. I’m not the kind of person who has patience for that kind of stuff, but since it was her first day of school and she wanted to make a good impression, I happily obliged. Last night she got in the shower and then after I rolled her hair up in sponge curlers. She looked very cute this morning. Jake had a good chuckle last night with Ellie in her nightgown and her hair all rolled up in curlers like a 60 year old woman. Ah, the things we do for beauty! I have high hopes for the good things to come in school this year. She’s not in the same class as her other friends Brynley and Mia, but I think that will be to Ellie’s benefit. Ellie’s teacher is Mrs. Christensen who is a brand new teacher at Reagan Academy this year, though it is her fifth year teaching. Ellie was very calm and excited to start school again! And as an insight into Ellie, this is a quote from last February: Ellie on Nathan getting to go Salt Lake today: “Nathan, you get to go to the upper case of Utah!....I mean capital....” First Day of Kindergarten:
First Day of First Grade:
First Day of Second Grade: