Thursday, September 2, 2010

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!

Wednesday, September 1, 2010

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!