Saturday, November 26, 2011

No Black Friday Specials at Medcenter

Though Medcenter wasn't having any Black Friday specials, Faith and I both found out that it was the best day to have an appointment. Everyone in Bismarck was either gone, shopping or sleeping, so we got into our appointments right away and were in and out very quickly.

For my appointment, I arrived at 9:30 to get my pacemaker battery replaced. A pacemaker check on November 11 via telephone showed that my battery was in ERI - the stage at which the battery begins to conserve energy because it's getting low. Apparently, it had been at that stage as of October 23rd - which is the day before I started my new job and also the day before I once again had health insurance. When a pacemaker is at ERI, it usually has about three months of battery life but because my heart sucks the juice out of my battery at a faster rate than normal, they advised me to get it changed as soon as I could. It worked out that I could get in the day after Thanksgiving - a holiday for us at work.

At first I was a little apprehensive about getting the procedure done in Bismarck as opposed to Mayo. In the end though, I am so glad I was able to do it here. The whole thing only took about 2 hours. The worst side effect I had afterwards was the shakiness that I felt. I was able to eat something though and since I was awake and alert, they let me go home. Of course I couldn't drive - Rob had been there the whole time so he took me home. I was pretty impressed with Rob - he stayed in the room while they were drawing blood and hooking up my iv. The only time he left was when I made a request for a caramel mocha while waiting to get discharged.

I am so thankful that I have the whole weekend to recover - I have been sleeping a lot. I am also a little sore and it's really black and blue. Faith constantly asks to see my owie. I was a little disappointed they didn't just go over my old scar - instead they created another one.

I really wanted to accompany Faith to her appointment later that afternoon with Dr. Ocejo. I had a lot of questions for him but due to my exhaustion I stayed home and slept  while Rob took her instead. At 46 pounds, Dr. Ocejo is happy with her weight and we are to continue doing what we are doing with her diet. She has actually been asking to eat more solids so that has been a good thing.

As far as the baclofen pump is concerned, he is fine with our decision to wait until she gains a little more weight. In the meantime, we will be getting another round of botox to help relieve the high tone in her legs. This time though, we will be getting her partially sedated (like I was for my procedure) so it's not so traumatic for her. 

After the appointment, Faith started to cry because she was having so much fun with Dr. Ocejo and was sad to see him go. She had been asking him all sorts of silly questions like "Does everyone on Sesame Street brush their teeth?" and "Do you know what a quest is?" They get quite a kick out of each other!

Over the Thanksgiving weekend, our appointments were both something to be thankful for and since we didn't get any Black Friday specials, it is good that we have great health insurance!

Wednesday, November 23, 2011

30 Days of Thankfulness

Throughout the month of November, I have noticed many of my Facebook friends celebrating the month of Thanksgiving by updating their status each day saying what they are thankful for. I haven’t been doing this on Facebook, so here are my 30 days of thankfulness all in one day.

During the month of November these are the things I have been particularly thankful for:


2. My wonderful husband and our amazing daughter

3. Our accessible van

4. Wi-fi

5. Finally being a two-car family

6. Living in Bismarck and in North Dakota

7. Praying friends and family

8. JOY International women’s ministry

9. Health insurance

10. Heaters that emit warmth

11. Wonderful Christian music

12. Our amazing respite care ladies who look after Faith

13. Having a good job

14. Warm coffee drinks w/ whip

15. Faith’s school and everyone who works with her there

16. Great haircuts from our stylist, Julie

17. Good books to read

18. Knowing a trustworthy mechanic who fixed the cracked boots on our  Hyundai

19. New clothes for work

20. Date nights with my husband

21. Flannel pajamas

22. Yummy soup

23. - a great site for writers

24. Faith’s new stander

25. Rob’s willingness to clean and his attempts to make dinner

26. The volunteers and the ministry of the  The Healing Rooms

27. Feeling peaceful during times of uncertainty

28. Getting good sleep

29. Connecting with other women who share a love for God

30. No sub-zero temperatures thus far and barely any snow

Saturday, November 19, 2011

Transistions - From Stay at Home to Working Mom

Rob and I have certainly had our share of transitions since getting married nine years ago. About seven months after having Faith, we closed our desk-top publishing business in Watford City and made the move to Bismarck. This was all totally unplanned but due to Faith's medical needs, we felt God was preparing the way for us to make such a huge transition.

Since coming to Bismarck, there have been more transitions including a few moves from apartment to apartment and having to get used to Faith's adaptive equipment, tube feedings, and the many therapy appointments that go along with having a child with special needs. It seems that just when we get into the groove of a new transition, another one comes our way. And more often than not, they are quite unexpected.

This latest transition involved me going back to work after being home with Faith for three years while Rob took his turn once again to be a stay-at-home dad. At first, Rob and I were a little stunned about our situation but the more we thought about it and the more we told God we trusted Him, the more we realized this transition would be a good thing for our family.

On my second day of work (October 25th) Faith turned 8 years old.
This past week marked one month since I've been working. There are many mornings I leave without even seeing Faith. She needs as much sleep as she can get so I don't ever want to wake her up to say goodbye. There was one morning though that I was all dressed for work and Faith got up and started crying when she saw me. She said, "Mommy, get back into your pajamas." It truly broke my heart to leave her that morning. Most evenings when I come home she says, "Mommy come over here so I can see what you're wearing." She's getting used to me wearing nice sweaters instead of old sweatpants!

All in all, Faith has been doing great with the transition. Although she misses her mom, she and her dad have truly been enjoying their time together. Rob has also been doing great getting her ready for school, taking her to get her hair cut and exchanging information with Faith's aides at school.

Rob and I decided long ago that one of us would always stay at home with Faith and for now, it's Rob's turn to be the stay-at-home parent. And while I have had to give up my Thursday morning Bible study and much of my writing time, I know that God will continue to guide us through this transition and any other ones that are sure to come.

Saturday, November 5, 2011

No Decision Yet Regarding the Baclofen Pump

Faith recently went to see a surgeon regarding the placement of a baclofen pump. At our last appointment with her specialist who oversees all of her therapy we were shown x-rays that proved her left hip was about 40% out of its socket. For this reason, we set up a consult with a surgeon and were looking at getting the baclofen pump sooner rather than later.

I was surprised to find out that the surgeon has some reservations about inserting the baclofen pump. The main reason for his reluctance is that Faith is still pretty small. They normally won't put the hockey-puck-sized pump in a child that is less than 45 pounds, which is pretty much what Faith weighs. There is extra concern with Faith because there is even less room in and around her abdomen due to her having a mic-key button. When Rob mentioned maybe waiting a year until Faith grew more, the surgeon said that was probably wise.

But still, there is her hip to think about. I really don't think her other doctor is going to be very happy that she's not getting a baclofen pump like right now. We could still go ahead with the surgery but it might cause complications because it would be sort of squished in there and too close to her pelvis bone and be very uncomfortable for her.  The pump then might cause more harm then good.

I feel like we are stuck between two doctor's opinions. One is very concerned about her hip, the other more concerned about her size. We are going to have Faith see her pediatrician soon. I was a little surprised she only weighed 45 pounds because at one time she weighed closer to 50. Last year we had decreased her feedings because her pediatrician thought she was getting too much Pediasure which was causing some stomach problems. So now we want to make sure she is getting enough Pediasure during her feedings and want to know what her ideal weight should be. We will also ask him what his opinion is regarding getting the baclofen pump.

In the end, though, it is still our decision. We truly pray for God's wisdom and continue to also pray for supernatural healing for Faith's hip.