Thursday, July 29, 2010

Vote for Mikan!

Voting for the cover kid for the March of Dimes benefit calendar that will feature Mr. Mikan begins August 1. Each vote is a dollar donation to the March of Dimes. The link below should take you to the web page where you can view all of the kids' pictures.
If you would like to see all of the pictures from the photo shoot, follow this link.

Other updates:

Mikan had an echocardiogram last week. We haven't received official results, but unofficially, everything looked "normal."

Next week Mikan will have an MRI to test for any brain abnormalities that may be affecting his walking. He may have mild CP, although nothing has been officially diagnosed yet. He is also seeing an orthopedic doctor at the end of next month.

We have noticed Mikan attempting to walk from one piece of furniture to another more often. This is new, so we're hoping it is a sign of progress to come.

Thanks for everyone's prayers during my surgery. I just saw the doctor today, and he said that everything looked great for now. I am almost 20 weeks. Let's keep that baby cooking.

Friday, July 23, 2010

Post Surgery

Surgery went as expected. The effectiveness of the surgery is based on how long the pregnancy lasts. So we'll pray. However, the doctor who did the surgery greeted me in the waiting room with a green fishing line that he told me to save for the baby book (I knocked on wood in my head for him).

Jenna got a spinal instead of a general anesthesia to prevent any meds getting to the baby. I did not pinch her legs without her feeling it.

Monday, July 19, 2010

Jenna's Birthday

Today, Jenna turned 27. I'm pretty sure she won't forget this one.
Ultrasound #1 at about 10:30 am. Baby #2 appears to be heading in the right direction.

T.M.I. Alert:

Ultrasound #2 at about 10:45 am. Jenna's anatomy isn't the proper size to hold a baby to term. What (the cervix) is supposed to be 4 cm long is only about 1 cm long. Therefore, a Wednesday outpatient surgery to help 1 cm be long enough to prevent a preterm baby (cervical stitching). Happy Birthday.

The procedure will happen during week 18 and 4 days. If we were to have a third child this surgery would take place around week 12. The doctor is mildly optimistic that it is not too late for this surgery to be successful. We'll know more Wednesday after the surgery.

This suggests an explanation to Mikan's water breaking early. Jenna never had an Ultrasound #2 during the first pregnancy, so we didn't know if what was supposed to be 4 cm long was actually 4 cm long.

So, no love making. Just baby keeping inning.

On the way home from Birthday Dinner, there was a rainbow. To me this was a reminder of God's promise loosely quoted "He doesn't give you more than you can handle, when you handle it with Him."

Sunday, July 18, 2010

Neurology Update..More Tests...More Doctors

When we described Mikan's problems to the neurologist, she seemed convinced that he had a form of Cerebral Palsy that had gone undiagnosed thus far. But after her physical examination, she seemed less sure of her hypothesis. She said that he most likely has a mild form of CP, but he wasn't showing several characteristic signs. For example, he doesn't cross or scissor-kick his legs. And when he uses his walker, he puts more weight on his legs than his arms. When she examined his legs and walking, she said it seemed that he had a coordination problem, not a muscle or spine problem. Just based on her examination, she said that if he has a form of CP, it is probably mild enough that we wouldn't change treatment. He may need PT for a long time, and he may have coordination problems for a long time, if not his whole life (although we're not willing to accept that yet given what he's overcome so far), but she didn't think medical intervention was necessary.


Just to be sure...

She ordered an IV-sedation MRI, a sleep-deprived EEG, and a load of blood tests.

The blood tests were to rule out rare possible causes for his poor coordination. For example, she said that low thyroid can be a cause that is often overlooked in preemies, because people associate all of their delays with prematurity. The MRI and EEG will have to be done in Ft. Wayne. Those are scheduled for August and September.

Even though Mikan had an MRI at 3 months, the neurologist said that it wouldn't necessarily show everything at that time; therefore, a repeat MRI is needed to check for CP or other possible causes of his delays.

She also wants him to see an ortho doctor to check his hips and make sure that nothing is out of alignment there that would be throwing off his balance.

In the meantime, we continue to give him opportunities to practice his walking. He likes taking his walker to the basketball courts near our house and walking from one hoop to the other, signing "basketball," then moving on to the next one. I don't think he'll let his poor coordination get in the way of being the next Michael Jordan, or George Mikan.

Thursday, July 15, 2010

Mr. March

Mikan will see his neurologist soon and we hope to get some answers about his walking, even if it is just "We can't find anything, and we need to just let him do it in his own time."

His eating cotintues to slowly improve. He eats several different types of cereals and chocolate and peanut butter chips consistently.

Mikan was chosen to be in a calendar to benefit the March of Dimes. There will be an online vote for the child to be on the front cover. Each vote costs a dollar and is a donation to the March of Dimes. I will post the link when the site is ready. The picture below will appear on the calendar.

Thursday, July 8, 2010

Eating and Beaching

After eating chocolate pudding...

Mikan's nutritionist and speech therapist worked together to create a new eating plan for Mikan. Now he gets whole milk and chocolate instant breakfast to eat orally, and whatever amount he doesn't take is g-tubed as pediasure. We were able to eliminate one of his feedings and spread them out so he gets hungrier. So far this is working great, and this week he added goldfish to his short list of foods he will actually swallow.

Mikan sees a neurologist next week for evaluation of his walking. If necessary, he will be referred to a physiatrist for further treatment.

Since Lake Michigan is a short 25 minute drive, we have been spending our weekends there. Mikan loves playing in the sand and water. His swim shirt perfectly covers his trach site in case any water would splash near there. The outside has a track that still won't close, so it may need to be stiched in a few months.

Also, please pray for one of my college friends who just gave birth at nearly 29 weeks. Her baby Olivia is doing well (just weaned off CPAP), but I'm sure they would appreciate any extra prayers.

Friday, July 2, 2010

More Doctors

Mikan's horseback riding has been going better than expected. He throws an initial tantrum when the instructor takes him and puts him on the horse, but he gets over it quickly. This week he got to ride backwards in the saddle. The hope is that the rhythm of the riding will help him develop core body strength that will aid his walking.

Because Mikan's walking progress has been slower than expected, his therapy coordinator suggested we see a pediatric neurologist for some testing who may then refer us to a physiatrist if he is diagnosed with something. We have this appointment scheduled already. Hopefully this is just a precaution and nothing will come up. The best news would be that he doesn't have any neurological issues preventing him from walking and that he will do it "in his own time." But if something is detected, we'd want the earliest possible interventions. We've also been encouraged to find a developmental pediatrian for Mikan. Just as we are beginning to see our regular specialists less, another few are thrown onto the team.

His ENT noticed that although the inside of his trach stoma is closed, he still has a little hole on the outside that isn't. In a few months, this may have to be surgically repaired since he is still at an increased risk for infections.

Mikan's pulmonologist ordered another arterial blood gas which Mikan was thrilled about. We haven't heard the results, but I'm confident he's doing fine. He will also have an oximeter study done (examining the readings from his heart and oxygen monitor) to make sure he is breathing comfortably.

Mikan's biggests achievements to date are eating tiny bites of cereal and saying five words: Daddy, doggie, ice cream, Angie (one of his nurses), and apple. I've been told not to expect "Mom" to make it into his vocabulary for awhile.