Easter Pictures

We enjoyed our first time to church with Jesse on Easter Sunday. It was good to be back and get to see everyone and celebrate Easter with our church family. After church we went to Grandma Mari and Grandpa Emil's home and had a delicious lunch. Chad, Jesse & I went home to check the sheep, while the boys stayed in town for a couple hours. Grandma & Grandpa then drove them out to the farm and stayed for a few minutes to look at the lambs.

Eating Cereal

Jesse started eating cereal over a week ago. He usually really likes it. He also has been drinking a lot more and I think has already gained some weight. I think before I had just been giving him about 4 ounces and he was content. Now I offer him more, and he usually drinks it - closer to 6 ounces. So maybe I just wasn't feeding him enough before, but since he is generally so content he never complained about it. Whatever the reason, it looks like he will be gaining weight now. I am going to start with some vegetables tomorrow. We will see what he thinks about that different taste.

March 20, 2008 Update

We went to Children's Hospital for Jesse's check-up on Thursday. Everything went as I hadexpected - not any significant changes. His chest x-ray was good - no fluid accumulation - so we will cut back his diuretic to once/day for a month, and then discontinue it. The echo showed he still has pulmonary hypertension (but we already knew that because of how his O2 sats drop when he isn't on oxygen). But it did look like he has improved some. The doctor recommended we come back in 2 or 3 months to recheck, and continue on the oxygen and sildenafil for now. I will be watching his o2 sats on the pulse-ox machine at home, and if he no longer desats when the oxygen is turned off I should call her, because that might mean we can discontinue the oxygen. But I don't think she would anticipate this happening for a least a few months. And there is no real way to know if he will ever fully recover.

One negative is his slow weight gain. A few days ago I thought he had been eating so much that he must really be growing. But when I put him on our scale he was under 13 pounds. Yesterday confirmed that he really hasn't gained any weight since our last appointment. He was 13 pounds 1 ounce yesterday. He seemed to gain very well our first week home from the hospital, but since then hasn't gained any. She wasn't overly concerned because she said kids on Portagen don't usually do very well, and children with Down Syndrome grow much slower to begin with. She said he is actually at the 25% on the Down Syndrome growth chart. But we agreed to put him on a 22 calorie/ounce formula (when he isn't drinking breastmilk) and I will monitor his weight more frequently to see if he starts gaining.

We had some labs done to check his hematocrit and thyroid and I will call and get those results today. All in all it was a good check-up and everyone thought he looked good.

Matthew has been sick, and the rest of us have little colds. We are also in the middle of lambing - I think 8 ewes had lambs yesterday. So we can't be gone from home for very long. We are hoping to go to church on Easter Sunday, but will have to see if we have recovered by then.

In Christ's Love,
Kristan


Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls. (1 Peter 1:3-9)

The Lord Will Provide

When Jesse was still in the hospital Pastor Ron had spoken with Chad about our financial needs. Pastor Ron shared that there were people wanting to help out. Chad basically told him that we would not be asking for any assistance, but if the Holy Spirit led anyone to help us, that they should follow his leading. God had provided for our needs in the past, and we were confident he would continue do so throughout the expenses we would incur from all of Jesse's needs. We have been so thankful for the various ways he has done that: through good crops and from generous gifts from friends, family and the church. A big surprise came the day following Chad & Ron's conversation. I received a call from Jesse's case manager in Sterling. Because of his disabilities, he had been on a Medicaid Waiver wait list since shortly after birth, but we expected to wait at least a couple years. But his case manager called to inform us that since Jesse had been in the hospital over 30 days we no longer had to count our assets on his application, so he would now immediately qualify for Medicaid during his hospital stay. He also would be put at the top of the Medicaid Waiver wait list because of his hospital stay, so he would start that program the day he was released. After completing all of the paperwork (a very frustrating process because almost no one knows anything about this program because it is so rarely used) we waited to see if this would really happen. Today I received the approval letter! This will save us a huge amount of money. With the high deductible and co-pays on our health insurance, our out of pocket maximum is $11,000/year for in-network providers (or $22,000/year for out-of-network providers). Medicaid should cover everything our insurance doesn't. Praise God for providing in unexpected ways!


And my God will supply every need of yours according to his riches in glory in Christ Jesus. To our God and Father be glory forever and ever. Amen. (Phillipians 4:19-20)

Love,
Kristan

Doing Great!

The transition to breast milk went great, and Jesse doesn't appear to be having any problems. If anything his O2 sats have been higher the past couple days.

I feel like kind of a hermit - staying home most of the time. I do hope we will be able to start getting out a little more and return to church again soon. People keep advising us to stay home because of all the sick people, and we really don't want Jesse to get sick. I'll feel a little better once he has breast milk for a while to build up some immunity. So, I am not sure when we will go back to church, but hope it is soon.

Thanks for all of your continued support and prayers.

March 6, 2008 Update

Greetings from "Holland"! Life has been so very busy here in Holland. I am sorry I haven't been diligent at getting updates on the blog, but you can be assured that "no news is good news." Jesse has been doing great since being home, with only some minor problems. He continues to have mucous issues, I presume from still having extra fluid in his system. He usually coughs quite a bit in the morning, and usually throws up every day or so. That isn't such a big problem, but it often soon after he has taken his medicine. He also has had a fever a few times, but nothing serious. I did take him to the doctor (in Sterling) once when his O2 sats were low for a couple days, but he wasn't too worried and the problem has resolved. I have been discouraged that his levels haven't seemed to improve since leaving the hospital, so I am not sure that he will be coming off oxygen anytime soon.

Well today is March 6th - the day we can go back to a normal breastmilk diet. But since it is a Thursday, I have decided to wait a couple days. If there is a problem, I don't want to have to decide whether we need to go to the ER over the weekend. So I will probably start on Sunday. I was disappointed a couple weeks ago when I stopped pumping due to lack of any milk. I had so hoped that Jesse would be able to nurse after his surgery. But, 5 months is a long time to pump and the stress of the hopsital stay really decreased my supply. I think I have enough stored breastmilk for about a month and then will have to go to formula. We are also excited about starting food soon - baby cereal.

Jesse has had visits from a occupational therapist and vision therapist. We are doing some exercises to increase head strength, but he doesn't like too much tummy time. The vision therapist is coming because of his "nystagmus" (involuntary movements of the eye). I will probably start researching this a little more.

I will let everyone know how the transition back to breastmilk goes.

Love,
Kristan