Our New Family Blog

As we were preparing our Christmas card this year, we decided it was time to discontinue Jesse's blog and start a new blog where we can post things about our whole family.

So please check out our new "Lange Gang" family blog at http://www.thelangegang.blogspot.com/

We will keep Jesse's blog open in case we ever need it in the future, but for now on please see our family blog.

We hope to keep everyone updated this coming year on all the exciting things happening in our family!
Kristan

Getting Bigger

I forgot to put in Jesse's weight from his last appointment. He is now 20 pounds 12 ounces - continuing to grow steadily.

December 11th Appointments

Thursday Jesse had 2 apointments at Children's Hospital. The first was with his physical therapist. We were very excited with how much progress he has made since his last appointment. He now gets to sitting position in an instant, army crawls everywhere, pulls to stand on everything, and is starting to "cruise" (has taken 1-2 steps while holding on to the coffee table.) Our next things to work on are climbing stairs, crawling on hands and knees, and assisted walking.

In the afternoon we saw his cardiologist. He was very unhappy and screaming after the EKG, and then went for an echo. I could tell from watching the screen that the pulmonary hypertension numbers were high. Thankfully, he calmed down after about a 1/2 hour break, and the numbers came way down. The doctor thought everything looked great and we probably won't have to go back for 3 months. And then we may be looking at starting to wean off oxygen. YEAH!!!

Thanks for your continued prayers for Jesse's health throughout the winter.

Kristan

New Teeth

I discovered 2 top molars in Jesse's mouth in the last couple days - so he now has his 4 bottom front teeth, 3 top front teeth, and 2 top molars - for a total of 9 teeth! Wow , he is getting a mouthfull, which is great, but he does bite ocassionally! I guess I was surprised by all these teeth, because children wtih Down Syndrome are often delayed in their teeth too. I think the little 2 year old at his party only had 2 teeth. But Jesse seems to be right on time with his teeth, and is starting to eat more foods.

Jesse loves to play ball and has a pretty good throw. He both says "ba" and has signed "ball".

He is pulling up more frequently on various things, and getting pretty good at sitting/falling back down. But he frequently falls and usually has a bruise on his forehead.

Jesse still has a wonderful smile that we see all the time at home, but has gone through a couple months of really being scared of other people. He frequently starts crying and screaming if someone talks to him or looks at him. It was getting so I couldn't even leave him with Grandma because he would cry the whole time. But last Tuesday he had a great day with her while I did lots of errands and went to Bible study. Hopefully he will get a little more comfortable with others so I can leave him once in a while.

This Thanksgiving was special as I reflected on all we have to be thankful for in Jesse's life, a life that came so close to ending last January. I am so thankful we have had this time to watch him grow and be part of our family.

Kristan

Oh how great is thy goodness, which thou hast laid up for them that fear thee;
which thou hast wrought for them that trust in thee before the sons of men! (Psalm 31:19)

New Pictures

In the Links section there are links to 2 short Down Syndrome video clips that we saw this Saturday at a Down Syndrome Speech and Communication Symposium that Chad and I went to in Denver. I thought I would share the links if anyone is interested. We had a good time at the day-long conference. We learned about speech and communication difficulties associated with DS, and I have a few ideas I will try to implement. But the biggest blessing was meeting other parents. There were close to 200 parents there. Since we took Jesse with us for the day, quite a few people came up to us and said "I remember those days of having oxygen." So we got to hear their experiences. One cute little 2 year old boy had a very similar story to Jesse - he also had surgery performed by Dr. Mitchell, but he was 5 1/2 months old and they knew he had developed pulmonary hypertension. He had a cardiac arrest and was in the hospital a month. But now at 2 he is off the oxygen, but still has it when sick or sometimes at night, and is still taking Sildenafil. It was good to hear from others who no longer need oxygen. Maybe someday Jesse won't either. I did see 2 babies that were on oxygen and visited with them a little. I think we will try to go to some more DS functions, as the support was encouraging. Jesse's speech therapist and occupational therapist also attended the conference on Friday (the day for "professionals" to attend) so I look forward to discussing with them what they learned.

I hope you all enjoy the new pictures - Jesse's 1 year portraits taken at J.C. Penneys. I have included a couple pictures and a slide show of all the portraits. They were all so good that I couldn't decide which ones to buy, so I bought the entire CD with the copyright so that we would have them all!

Love,

Kristan

New Teeth

Sorry for not updating for so long. We had a busy week last week. Aunt Kim was here with her 4 children, so the 8 cousins had a fun week on the farm and at Grandma and Grandpa's in Sterling. We did a lot of art projects throughout the week, culminating with an "art show" on Friday so everyone could see their creations. Tuesday we visited the Overland Trail Museum and then had a delicious "Dinner of Thanks" with Grandma and Grandpa, complete with turkey and all the fixings.

Jesse can now get into the sitting position easily, and can pull up to standing with a little assistance. We have worked a couple times on stairs, but it is a lot of work. The big news is that he now has 2 teeth on top, for a total of 4. He is making the transition from formula to cow's milk. He is starting to drink a little from a sippy cup. He likes riding in the backpack, and we had a fun time going to the Butte with all the kids on Friday afternoon. Jesse really likes cats, especially our new little kitten Calli, and he is quite gentle with her.

While Kim was here, she came down with a cold and almost lost her voice. Sam came down with a fever, but seems better today. Jesse has a runny nose and cough. And I have slightly sore throat. I hope we don't all catch it.

After our break, we will be getting back to school tomorrow.

Kristan

Done with Heart Cath

After about a 2 1/2 delay due to an emergency cath that had to go ahead of Jesse, Jesse is now done and asleep. We are leaving him alone so that we don't wake him, but did get to sneak a peak at him. He looked good.

Everything went well. The tests showed he has borderline/mild pulmonary hypertension when on room air. So the doctors would say he is "controlled" - meaning that the medication has the hypertension under control. He responded well to oxygen and nitric oxide which is good. If they don't respond, that means that medication doesn't work and wouldn't help him. That would mean there was permanent damage to the blood vessels - so it is good that he is so "reactive". They are once again increasing his sildenafil dose and would like him on the oxygen most of the time - ok for short periods off.

The bronchoscopy showed that his lungs and airways look good. They also will run tests on fluid from his lungs to check for bacteria, viruses, and lipids. If there are lipids that would mean he is aspirating formula when drinking.

Thank you for all of your prayers. It was a nervous time for me, and I am glad it is over. I am not sure when we will be getting out of the hospital, but it may be later this afternoon.

Kristan


Bless the LORD, O my soul,
and all that is within me,
bless his holy name!

Bless the LORD, O my soul,
and forget not all his benefits,

who forgives all your iniquity,
who heals all your diseases,

who redeems your life from the pit,
who crowns you with steadfast love and mercy,

who satisfies you with good
so that your youth is renewed like the eagle’s.

Psalm 103:1-5

1st Time to Sit Up

Last night Jesse got up into the sitting position all by himself while crawling around in the kitchen. It was very exciting!!!

We are getting ready to leave to go to Denver for the heart cath tomorrow. We have to be at the hospital at 6:00am, but I think the actual procedure is at 8:00am. They will also be doing a bronchoscopy.

Cardiac catheterization (heart cath) is the insertion of a catheter into a chamber or vessel of the heart.
See http://www.pulmonary-hypertension-treatments.com/heart_catheterization.html for a description of the procedure.

Bronchoscopy is a test to view the airways and diagnose lung disease. A bronchoscope is a device used to see the inside of the lungs.

We will let you know as soon as we know any results.

Kristan

Friday Appointments

On Friday, Jesse's 1st appointment was to have his pictures taken at Penney's. It went great and the photographer took so many good pictures I couldn't decide what to order. I had selected 19 poses that I liked. Now you they offer the option to buy a CD with all the pictures - so that is what I did. That way I can get as many printed as I want, and make a slide show, etc...

At noon we went to the pulmonologist. It wasn't much of an appointment. They thought he was doing great right now and agreed that the inhaled steroid (Flovent) should be continued at least until next spring. Dr. Kerby will perform the bronchoscopy on Tuesday after the heart cath so that she can look at his lungs. Then she will decide if he needs any further testing or treatment.

So, we have to be at the hospital at 6:00am on Tuesday, and will hopefully be out that evening (but are supposed to pack an overnight bag in case he has to spend the night.)

Kristan

Anna and John J. Sie Center for Down Syndrome

August 4, 2008
The Children’s Hospital Announces the Establishment of the Anna and John J. Sie Center for Down Syndrome
Center will be first of its kind in the Rocky Mountain region

Photo courtesy of The Denver Post
Related News
New Center Aims to Improve Living with Down Syndrome (The Denver Post)
Sie Family's Gift for Down Syndrome Center at Children's Announced (Aurora Sentinel)

The Children’s Hospital announced July 30th the receipt of a multi-million dollar gift from the Anna and John J. Sie Foundation that will go toward the establishment of the Anna and John J. Sie Center for Down Syndrome (the “Sie Center for Down Syndrome”). The Sie Center for Down Syndrome will be the first of its kind in the Rocky Mountain region.

The gift includes a $2 million endowment and up to $175,000 per year for ten years. The announcement of the Sie Center for Down Syndrome marks the beginning of a two-month celebration to raise awareness and support for programs that are helping make Denver the national leader in health care and research for people with Down syndrome. The Sie Center for Down Syndrome at The Children’s Hospital will provide medical care to children with Down syndrome, hire and mentor a medical “dream team,” provide up-to-date information on Down syndrome to women who have received a prenatal diagnosis of Down syndrome and participate in collaborative ground-breaking clinical trials.

“We are committed to hiring and inspiring a comprehensive team of national experts who together will make tremendous strides in caring for children with Down syndrome,” said Jim Shmerling, DHA, FACHE, president and CEO, The Children’s Hospital. “Ultimately, we hope to help change the paradigm of how individuals with Down syndrome are perceived by society.”

“The Sie Center for Down Syndrome will provide, locally and globally, the highest quality clinical care, therapeutic development including physical, occupational and speech therapies, medical care, societal education and advocacy in the pursuit of its mission,” said Stephen R. Daniels, MD, PhD, pediatrician in chief at The Children’s Hospital. “Our experts from a variety of fields will have the opportunity to catch medical issues early so the trajectory for children with Down syndrome will be greatly improved.” Daniels is overseeing a national search for a dedicated clinical care center director.

“One of the key goals of the Anna and John J. Sie Foundation is to make Colorado the best place for people with Down syndrome to live,” said Michelle Sie Whitten, executive director, Anna and John J. Sie Foundation. “It is our belief that innovative and effective private-public-government collaboration in service, intervention, and research is required in order to achieve that goal. Once achieved, the expectation is that Colorado will serve as a template for other states, regions or even countries in terms of successfully tackling issues related to Down syndrome.”

Anna Sie continued, “When our granddaughter, Sophia, was born we had no idea what an uphill battle children with Down syndrome can have in our society. Low expectations and poor health are at the root of the problem. That’s why excellent medical care for these children who can then sleep better, do well at school and contribute on so many levels to society and our community is at the heart of what we anticipate this Center will do. We are thrilled about the prospects.”

With a shared vision of offering the best clinical care for children with Down syndrome in the nation, the gift from the Anna and John J. Sie Foundation has already enabled The Children’s Hospital to recruit Patricia Winders, the world’s leading physical therapist specializing in Down syndrome. Winders is the author of Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals¸the only comprehensive physical therapy work that provides essential information for both parents and professionals. Recruiting Winders, who joined The Children’s Hospital in December 2007, was the first step toward fulfilling this vision.

At the July 30 press conference, 5-year-old Sophia Whitten, who happens to have Down syndrome and is the granddaughter of Anna and John J. Sie and daughter of Michelle Sie Whitten and Tom Whitten, had the honorary distinction of cutting the ribbon that symbolizes the hope and excitement surrounding the creation of the new comprehensive Sie Center for Down Syndrome.

About the Anna and John J. Sie Foundation
The Anna and John J. Sie Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with emphasis on Down syndrome, education, media, business, and technology. The foundation is a supporter of The Children’s Hospital, the University of Colorado’s “The Sie Family Down Syndrome Break-Through Research Initiative,” the University of Denver’s Institute for Sino-American International Dialogue, the School of Science and Technology, the Denver Art Museum, the Starz Film Center, and numerous other civic, social and educational institutions.

http://www.thechildrenshospital.org/news/pr/2008news/Sie_Down_Syndrome_Center.aspx

Linda Crnic Institute for Down Syndrome

Sie Foundation Commits $34 Million for Down Syndrome Research

The University of Colorado has announced a $34 million pledge from the Denver-based Anna and J. Sie Foundation to establish an institute designed to help eradicate the ill effects associated with Down syndrome.

The new Linda Crnic Institute for Down Syndrome at the University of Colorado Denver’s Anschutz Medical Campus will be the first facility to comprehensively address Down-related basic research, clinical research, and clinical care. The University of Colorado Denver, the University of Colorado at Boulder, and Children’s Hospital in Aurora have each committed space, personnel, and overhead for the institute, which will recruit top researchers inside and outside the field of Down syndrome.

Within ten years, the institute is expected to grow into a $150 million organization with a staff of more than one hundred and sixty people. "One of the focuses of the [institute] is to better understand ways to improve the cognitive ability of people with Down syndrome," said Dr. William C. Mobley, the institute’s executive director. "Through research and improved care, we can make it easier for them to go to school, make friends, have jobs, get married, and ultimately live independently."

“Global Research Institute at University of Colorado Denver Aims to Eradicate the Ill Effects Associated With Down Syndrome.” University of Colorado Press Release 9/22/08.

http://foundationcenter.org/pnd/news/story.jhtml;jsessionid=WQ3NNCJN3XDBJLAQBQ4CGXD5AAAACI2F?id=228400027



You can read more about the new "institute" at these links:

http://www.9news.com/news/local/article.aspx?storyid=100262&catid=346

http://www.ascribe.org/cgi-bin/behold.pl?ascribeid=20080922.125250&time=13%2032%20PDT&year=2008&public=1

http://www.uchsc.edu/som/crnic/ajsfoundation.htm

Thursday's Appointments

This morning Jesse and I drove to Children's Hospital for Jesse's first appointment with Patricia Winders, a Physical Therapist who recently came to Denver from Maryland to join the new "Linda Crnic Insitute for Down Syndrome". She is the author of the book: Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals. She has been exclusively working with children with Down Syndrome for many years (I think since 1981). Her focus is on teaching the children how to do skills correctly (such as getting into sitting position, pulling-up, standing, etc.). This prevents future problems. I really enjoyed meeting with her and will be implementing her suggestions at home. Jesse continues to get occupational therapy in our home with Michelle Kaiser - usually every other week - which we really enjoy also. I think I will continue to come in to see Patricia Winders every month or two, and use the suggestions in her book. From the short session today, it looked to me like he will be learning how to get into a sitting position pretty quickly which is very exciting!

This afternoon we met with a neurologist. Jesse's EEG was normal, and after reviewing the video she felt Jesse's episodes are not seizures. During the appointment he actually had a few short "episodes" so she got to see first hand what they look like. We aren't really sure what they are, but seem to be just a silly baby thing. She will talk with Dr. Ivy tomorrow and hopefully he will think it is ok to go ahead with the heart cath next Tuesday.

We are spending the night here in Denver and Jesse will have his 1 year pictures taken in the morning, and then go to see a pulmonologist. Hopefully that appointment will be as positive as today's were.

Kristan

Happy Birthday! Love, Matthew

This is what Matthew shared at the party:

Jesse – Do you know that your name means “The Lord Exists”? We can see that in all that has happened in your life. Look how God helped you get better after your surgery.

Jesse, I am glad that you are my brother because you are cute, and you are lots of fun to play with. I enjoy being your big brother and helping you learn things like how to crawl, and how to clap your hands when I tell you to. Jesse, you are always smiling and happy. I wish I could be so joyful all the time like that too.

Jesse, do you know that my name – Matthew – means “gift from God”? I think that is true for me and for you and for all my brothers. Jesse, you are a gift from God too.

I love you.

Happy birthday.

Jesse's Birthday Party!

Thank you so much to everyone who helped us to celebrate Jesse's birthday. We had a very special party! I will try to post some pictures soon. I have had requests to post what I shared at the party (especially for those who were unable to attend.)

World Travels - Jesse’s 1st Year
You might think that we are an ordinary, local farm family, but the last year launched us into a life of world travels. After Jesse’s birth a few people shared a story with me called “Welcome to Holland”. In it the author compares the experience of having a child with a disability to going on a long-dreamed about trip to Italy. But as the plane lands you find yourself not in Italy, but in Holland. It’s not what you had dreamed or planned, and it takes some adjusting until you realize all great things about Holland. Well, we were quite surprised by Jesse’s diagnosis, but I thought I was well-adjusted to our new life in Holland. Jesse was a delight – so happy and content, with a beautiful smile, even while awaiting his heart surgery without being allowed to eat.

Then our next world travel began – with Jesse’s cardiac arrest and 35 day hospital stay. While in the hospital I wrote an entry on Jesse’s blog title “Welcome to Siberia.” We were no longer in Holland. We were in a cold, dark place, a place I definitely did not want to be. But even there, God was with us. God is always there. As Psalm 139:7 says “Where shall I go from your Spirit? Or where shall I flee from your presence?” God will never leave us. It was in those darkest hours that we most clearly saw God’s miracles: the miracle of Jesse’s life – of his heart beating again; the miracle of how God provided for us – financially and emotionally, all the people who prayed for us and supported us. And through all of it, Jesse continued to be happy and content – even with 10 days of IV nutrition with only limited amounts of pedialyte to drink. I was so thankful to get out of Siberia and return to Holland. At that point I thought “We made it – Jesse is all better now and we can get back to our “normal” life. But once again things did not follow my plan. It seems that God still had (and has) lots of other destinations he wanted us to see. Jesse’s medical issues over the last few months have included pulmonary hypertension, possible asthma, and now possibly seizures. And rather than being “all better” he is now on more medications. I had once thought “oh, if we can only get through the heart surgery then everything will be ok.” Now I am struggling with accepting that maybe everything won’t be ok, that maybe Jesse will have some of these conditions for his whole life, and there is even the possibility that these conditions could shorten his life.

So where are we now, and what is our next destination? We aren’t in Siberia, and I don’t think we are in Holland. I guess we are just HOME. Home is the place where we are safe in God’s loving care – and where no matter what foreign country we may be in, we do not need to fear. I often have to remind myself of that by reading Isaiah 41:10:
"Fear not, for I am with you; be not dismayed, for I am your God;I will strengthen you, I will help you, I will uphold you with my righteous right hand."

Jesus, our Good Shepherd, is the leader and he has a journey planned for us and our job is to follow – as he says, “Come follow me.” The Good Shepherd always provides for our needs with green pastures and still waters. Our job is to follow him to those green pastures, rather than to run away like a lost sheep. We cannot hide from God and if we stray he looks for us, correct us, and brings us back. HOME – a place where we remember that no matter what we are going through, God is always there, leading and holding us:
“even there your hand shall lead me, and your right hand shall hold me.” (Psalm 139:10)

God has blessed us with this wonderful child, Jesse, and I am so thankful to be able to celebrate his 1st birthday with him and with all of you. Thank you so much for all of your support and friendship. May we all continue to follow God, whether it be to Italy, or Holland, or Siberia, knowing that if we are his sheep we all have the same final destination - in Heaven with Him.

Jesse turns 1!!!

Happy Birthday Jesse. Today Jesse turned 1 year old. Amee called to tell me I needed to post a 1 year picture - so I just took this. Isn't he cute!!! We had a normal school day here at home and will be celebrating tomorrow at his big party. We hope you will all be able to join us.

Kristan

Our Trip to Denver

Matthew came to Denver with Jesse and me on Thursday. Matthew had been having problems breathing since Tuesday (due to asthma and a cold). From Wednesday night to Thursday morning he was getting worse, and the albuterol inhaler only helped a little and for a short time, so since our doctor is closed on Thrusdays, I took him to the ER at Children's. He was given a couple of nebulizer treatments and steroids. Later in the afternoon they did an x-ray and said he had a small area on pneumonia in his right lung, so they also prescribed an antibiotic. While he was in the ER, Aunt Kelly came to stay with him while I took Jesse to his hearing test, which he passed. Matthew is doing much better now, but still has a cold, which I have come down with, and I think Collin might be too.

Jesse went to his 2 appointments on Friday. He has been having what we think might be small seizures so he will be getting an EEG soon, and they would like him to see a pulmonologist to investigate the respiratory issues. Dr. Ivy would like they issues addressed before his heart cath on October 7th. Jesse is growing well, and up to 19 pounds 5 ounces. The worst news was that his echo was worse when he is not on oxygen, so Dr. Ivy would like him on oxygen 24 hours a day (earlier he had said short times for baths, playing outside, etc. were ok.)

Chad & I took the boys to the Rockies game last night, which they won, and then we saw a fabulous fireworks display! Chad went home late last night so he could be there to bale hay today, and I'll be heading home soon with all the boys. Then it looks like I'll be coming back next week or the week after for more tests/appointments. I did tell the doctors we couldn't be here next Friday since its Jesse's birthday!!!

I'll post again when I have more information.

Kristan

You are invited to a party!

A Celebration of Jesse's 1st Year of Life

.

We look back on a year of miracles and milestones,

with many thanks for everyone's support and prayers.

.

Please join us in celebrating Jesse's birthday.

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Saturday, September 27th

1:30-4:30pm

The Berean Church

12527 County Road 37

Sterling, Colorado

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May your presence and prayers be your only gift.

Chad & Kristan Lange

More Problems with Oxygen

Last week, Jesse's oxygen was once again low. Wednesday night was the worst, with little sleep and saturations in the 80's while on 1 1/2 liters. Another trip to the doctor on Thursday didn't provide any certain answers, but we started another 4 day course of steroids (Prednisolone). And by Sunday he was doing great! I asked the cardiologist what it meant that he responds to the steroids, and she said it was "restrictive airway disease", which probably does mean asthma. I would like to take him to see a pulmonologist, but don't see any reason while he is doing great, so I will wait for the next episode of low saturations.

We are going to Children's hospital on Thursday and Friday for a few appointments: a hearing test, to see a pediatrician in the Special Care Clinic, and for an echo and visit in the pulmonary hypertension clinic. Then Friday night, Chad & I are going with the 3 older boys to a Rockies baseball game - with fireworks!

We are looking forward to, and planning for, Jesse's first birthday on September 26th. It is hard to believe he is going to a year old.

Kristan

Another Trip to the Doctor

Thursday morning Jesse coughed a little and had a little runny nose and his oxygen ran a little lower through the night. Oh no, another cold. I didn't take him to the doctor because he seemed fine all day. He was cranky while out to dinner that evening for my parents anniversary, and when we got home I found his oxygen was in the 80's. It ran low all night and he was breahing harder. He tossed and turned all night, not able to get any good sleep. So we went back to our doctor in Sterling on Friday and he agreed with me that it didn't really seem like a cold, but rather asthma symptoms (which may also have been the problem last time we thought it was a virus). So yesterday he started breathing treatments (albuterol inhaled with a nebulizer). He is supposed to have them every night before bed, and then I can give them up to every 4 hours as needed. He had 1 treatment at the doctor's office and then again before bed. His breathing was much better through the night and he slept soundly all night, although I did still have him at 1/2 liter. So we will continue with this treatment for the time being and see how things go. I am glad if this helps, but it would also be nice if he doesn't really have "asthma" that needs to be treated every day. I don't know how this all fits in with Jesse's pulmonary hypertension. Asthma is bronchoconstriction - constriction of the airways. Pulmonary hypertension is pulmonary vasoconstriction - constricition of the pulmonary arteries. I probably spend too much time trying to research things on the internet, trying to understand what is going on in Jesse's little body. I still hope some of these problems will heal and go away. Please pray that all Jesse's doctors will have wisdom in making a correct diagnosis and in treating his conditions.

Love,
Kristan

11 months old

A little progress report on Jesse -
Jesse is now over 11 months old. He can sit for a fairly long period of time now if I put him in a sitting position. He still "belly crawls" all over. His favorite things to go for are the shelf with the DVDs, and at Grandma's he goes across the living room to take off the grate over the heating duct and play with the spring door stop. He hasn't said any words yet. He definitely likes to be with Mom. At church he has stayed in the nursery a few times and plays fine for a while, but once he gets upset no one can calm him down so they have to come get me. He has started clapping, imitating me. He enjoys eating most foods, but especially likes graham crackers and yogurt.

Jesse's oxygen levels seem to be getting somewhat better, but it is strange to me how they can change. A few examples: Last night I turned off the oxygen while he was still awake and he stayed at 95% for quite a while, and still stayed above 90%, but within a few minutes of being asleep he was below 90, and soon down to 85%. But he was definitely going down slowly. On oxygen he stayed at 96-97% all night, then after a bottle at 6:00am in the morning he was down to 91-92% for a couple hours before coming back up. I'm not sure why he goes so low while he sleeps. I don't think that is pulmonary hypertension, but just because he breathes so shallowly. So, his heart cath is still scheduled for October 7th, but... I am wondering if he is staying in the 90s while awake, maybe he is getting better and doesn't need the cath. The doctor still wants to do it, but I am hoping to take him in sometime in September so they can do another echo. The one done in the ER was while he was on 1 liter oxygen, so that is why it looked better. I would like to see how it looks when he isn't on oxygen. But we will see what the doctor says...

We are getting reading for Sam's 3rd birthday on September 10th, and Jesse's 1st birthday on the 26th. And we plan to start our school year this week. Matthew is in 6th grade and Collin in 2nd. So we will have a fun and busy month.

Kristan

Doing Much Better

Jesse seems to over his cold, and his oxygen saturation levels are higher than ever (even higher than before his cold.) I don't know if this is because of the steroid, so it may be that once that is out of his system, they will go back to where they had been. I will talk to the doctor tomorrow to see about reducing his oxygen flow. Maybe Jesse is getting closer to not needing the oxygen at all!!! Praise God for healing Jesse from this lingering cold.

Kristan

Back Home

Jesse & I got back home today around 2:00pm. His oxygen stayed fine, except for a period this morning when once again it was in the 80's. This happened after his early morning bottle so I am wondering if he really is aspirating while drinking (although we already had the upper GI and swallow study done that showed he isn't.) I am wondering if he possibly aspirates when he is very tired or relaxed, basically asleep while drinking. That would explain the low numbers late in the evening and early in the morning. (But he has never had this problem in the past.) I will see what happens tonight.

I also weighed him when I got home and he is back down to 18 pounds 6 ounces, after LOTS of wet diapers yesterday. He was 19 1/2 pounds on Wednesday at Dr. Clark's office and yesterday at Children's. I am not sure why he was retaining so much water, but glad that he seems to have gotten rid of it.

He is busy belly-crawling all over, and having a good time here at home. His breathing seems better, but he still has a cough. I hope he is on the road to recovery.

Kristan

A Day at the ER

Jesse has been unable to get rid of his cold, going on 3 weeks now. So yesterday I took him back in to our doctor in Sterling who prescribed an antibiotic and a steroid. But then last night his oxygen was going quite low - into the upper 80's while on 1 liter of oxygen. When I spoke to the pulmonary hypertension nurse early this morning, she said I needed to get him in to see a doctor within a couple hours - either in Sterling or Denver. So we decided I should take him to Children's in Denver. I left the house around 6:00am and had him on a pulse-ox monitor the whole way. The first 45 minutes his oxygen was great - around 98%, but then around Fort Morgan it was back to the upper 80's, so I had him turned up to 1 1/2 liters part of the time. When we checked in at Children's he was at 92%, but once we got into a room in the ER he was at 95-99% all day! So none of the doctors saw him when he was having a hard time breathing. The cardiologist originally speculated that it was a heart problem (rather that a virus), because Jesse has also gained over a pound since last week (probably fluid). But they did an echo of his heart which showed his heart was doing great. So the final diagnosis is still a virus, with fluid in his lungs (not pneumonia). One idea for today's improvement is that last night's dose of steroids has started working. We will see what his levels are tonight. The cardiologist said as long as his oxygen stays above 88% that it is ok, and gave instrustions on when to turn up the oxygen, or when to call/come back to the hospital. We left the hospital around 5:00pm, and Jesse and I are staying with Steve and Wanda overnight because I am too tired to drive home. Please pray that his oxygen levels stay up and that Jesse can finally get better. (If he gets over this, his heart cath is scheduled for October 7th.)

Kristan

Heart Cath Postponed

Jesse has had a cold for over a week with various symptoms. Friday I took him to the doctor in Sterling, but by then he had no fever and Dr. Clark thought he had a virus. Then Sunday Jesse had a runny nose. But the doctors at Children's said they would still do the heart cath if he didn't have a fever, and the drainage was clear. So Chad & I came to Denver late yesterday. Jesse's oxygen was a lot lower last night and most of the night I had him at 1/2 liter oxygen. We went to his first appointment this morning with an ENT doctor to go over the sleep study results. But I don't feel like the doctor really went over the results at all, and didn't really explain anything to us. He did answer the couple questions I asked, then he did another scope even though I said he just had one done in June. It showed his adenoids were slightly enlarged, but he didn't feel that they would contribute to the apnea, and didn't see any need to remove them at this time. So, I guess the diagnosis is that Jesse primarily has central apnea, which may go away as he grows. He said he would want to do a repeat sleep study, but didn't say when. I then asked for a written copy of the report and read that after leaving. I have a couple questions I am going to ask Jesse's cardiologist.

After lunch we went in for his appointment with a pulmonologist. Here they used a pulse-ox and found his oxygen was in the mid 80's on his normal 1/4 liter oxygen. We ended up having to go up to 1 liter to get him up to 94-95. We did a chest x-ray which showed he does not have pneumonia. So they think he has a virus. Since his oxygen was so low they will not do the heart cath, for a couple reasons. One is that his pulmonary pressure is probably quite high right now, so the heart cath would not be a good indication of his normal pressure. Also, the pulmonologist is going to do a bronchoscopy to look at his airway and down into his lungs. After this procedure she said healthy child will need increased oxygen (around an extra liter for at least 4 hours) and sometimes need to stay the in the hospital for a couple days. So she thinks because of Jesse's problems he has a greater chance of needing hospitalization after the procedure, so we want to do it when he is healthy, not when he already needs extra oxygen.

So, now we wait again - for at least 3 weeks after Jesse is well. We are staying in Denver overnight to make sure his oxygen levels are stable, and not getting worse, and then we will go back home tomorrow.

Thank you everyone for your prayers.

Kristan

Fun in the Water

Jesse LOVES bath time. In the tub he likes to have just a small amount of water and lie on his tummy and squirm around. I have to hold on tight! He also enjoys going in his pool outside.

Kristan

Some Cute Pictures

I realized that I shouldn't use this blog just for medical updates since some of you reading don't get to see Jesse and see how much he is changing. He is starting to sit up on his own for a few seconds - enough for me to snap a picture before he falls over. He pushes up on his hands, and likes the position of the 3rd picture - I'm not sure what to call it - with his arms and legs up in the air. He rolls all over and "crawls" on his belly to get where he wants go. He has started using the high chair to eat in rather than the swing, and loves to eat. He eats little puff cereal and had some toddler cookies whiche he loved (he likes sweet things!!!)

Kristan

Sleep Study - Preliminary Results

I got a preliminary report from Jesse's cardiologist regarding the sleep study. It was abnormal and showed episodes of obstructive and central apnea. (In central apnea the brain's respiratory control centers are imbalanced during sleep.) We have an appointment on August 12th to go over the sleep study results with a doctor. Then Jesse with have the heart cath on the 13th, and a bronchoscopy to look at his airway. Please pray for those tests to go well.

Kristan

The "No" Sleep Study

Well, we are done with the sleep study. They should call it a "no" sleep study. Jesse actually did quite well, but kept grabbing at his face all night trying to take things off - mostly the nasal cannula. He also took 2 bottles during the night - he normally sleeps all night. Then at 6:00am the study was over and they wake us up. I think I managed to get a few hours of sleep. Jesse woke up with a smile on his face. He is such a happy baby. We will have to wait a week or two for the results. I really don't know what to expect. All I know is that they start the study on room air, and only turn on oxygen if they go below 80 for 2 minutes. And the nurse had to turn on the oxygen I think within the first hour. She started it at 1/8 liter, but later I saw it was at 1/4 liter (his usual amount).

Now I am with Jesse waiting to see an eye doctor - mostly about the nystagmus. I think his plugged tear ducts have finally resolved, just within the last couple weeks.

The next big test is the heart cath - now scheduled for August 13th. It is not supposed to be overnight, but please pray that that goes smoothly as the anesthesia and ventilator scare me.

Kristan

update - continued

The doctors were not able to fix the pH machine, so we were discharged late Monday night and got to Grandpa and Grandma's home around 10:30pm. I hopefully will hear in the next few days whether we have to redo the test for the full 24 hours, or if the 7 hours will give them enough readings. The first hour after inserting the pH probe Jesse was VERY unhappy, but he did finally get used to it and then we had a fun day at the hospital. We got to visit with lots of nurses who were so excited to see how he had grown. On Monday Jesse weighed 17 lbs 13 oz, and was 28 inches long. We took a couple trips to the playroom where Jesse had so much fun with all the toys! He was rolling all around playing with toys while I kept trying to keep him from getting all tangled up in the wires.

I also had the opportunity to have a nice lunch with Mary, AnnaSophia's mother, and then even took Jesse back to see AnnaSophia and Steve. AnnaSophia looked good, but she was very fussy - either in pain, or just unhappy about her whole situation. But it was so wonderful to be able to see her and think of all that God has done for her, and for all of us. There are so many similarities to things that have happened to her and Jesse. I am so thankful that God brought our 2 families together.

Jesse goes back in to the hospital tomorrow for a 2 hour swallow study in the afternoon, and then will be spending the night for a sleep study. Please pray that the sleep study goes well and he is able to sleep. It seems like it will be difficult being hooked up to all sorts of probes.

Sam and I had a good day with Grandma Wanda, while Collin has been at "Chess Camp" (in Denver, all day Monday-Wednesday and he is loving it!) Chad and Matt are back taking care of the farm. I am looking forward to getting back Thursday after all these appointments.

Kristan

A Good Echo

Jesse and I are here at Children's for all of his tests/appointments. We started off with an echo of his hear which showed the pulmonary pressure to be around 30 - a great improvement from the June reading of around 70! It looks like the increase in medication is helping. Dr. Ivy met with me to discuss things. He would like to do a heart cath in August that will give an actual measurement of the pressure (the echo is only an estimate). The cath also measures his response to oxygen and medications to best determine his treatment. Fortunately the pressure was lower this time, otherwise Dr. Ivy said he would have had to start him on other medications today.

After those appointments we had the pH probe inserted. It is a thin tube that goes through a nostril down the esophagus to right above the somach. It is attached to a small monitor where I can see the pH reading. This is used to diagnosis reflux. I have to push some buttons to tell it when Jesse starts and stops eating, and when he is either lying down or in an upright position. This helps the doctos tell if certain positions, activities, foods, etc. cause reflux. Jesse is having the test done because sometimes kids aspirate the fluid into their lungs, and that could be contributing to the pulmonary hypertension. Around an hour ago the machine started to malfunction - it's giving really strange reading - very low and even negative numbers. Now after some time trying to fix it they have given up and I think we are going home. I'll write more later.

Kristan

Praise God for AnnaSophia's New Heart

Early this morning God provided a miracle - a new heart for our little friend AnnaSophia. She has come off the bypass machine and the heart is beating! Praise the Lord! Please pray for AnnaSophia, and also for the donor family as they grieve the loss of their child.

Kristan

Waiting for More Tests

Jesse continues to do very well - getting stronger every day. He is getting closer to being able to sit up, and standing with assistance. He got his first tooth last week. He babbles quite a bit - ba, ba, ba and da, da, da.

It looks like the increase in medication might be helping. The last couple days his oxygen only falls to 83-85 (instead of 80) when he isn't on oxygen. We have more appointments scheduled in July. On July 14th he goes in for an echo of his heart at 9:00am and then will see Dr. Ivy, the pulmonary hypertension specialist at 10:00am. He will then advise us as to how soon we need to do the heart cath. Then at 11:30 we go for the pH Probe which is a 23 hour study with a very thin tube through his nose down into the esophagus to measure pH, to check for reflux. Then on July 16th he will have swallow study, about a 2 hour test and then spend the night again for a sleep study. The waiting is so hard. I am hoping we find some information that will help us to treat Jesse.

Please pray for little AnnaSophia and her family - you can check her blog for the latest update www.ourannasophia.blogspot.com . She is in Denver staying at the Ronald McDonald house awaiting a heart transplant.

Kristan

Some Encouraging News

I spoke with Jesse's cardiologist on the phone yesterday and she gave me a little more encouraging news. She didn't really think that the pulmonary hypertension had gotten worse, it just hadn't gotten any better. It may just be taking longer to resolve than expected.

Latest Doctor Appointments

Today we had a full day at Children's Hospital starting at 9:00am and ending at 4:30pm. We started the day with an upper GI to check for aspiration. The test was normal - showing no reflux or aspiration. After lunch we saw our cardiologist and had another echo done. The echo showed that despite the increase in medication, that the pulmonary hypertension has actually gotten worse in the last few weeks (systolic reading of over 70 now). Then we saw an ENT doctor who did a scope. Jesse's tonsils are small, but adenoids obstruct about 50% of his airway. The doctor did not think surgery was necessary solely based on that, but wants to wait for the sleep study which is scheduled for July 16th (unless there is a cancellation and we can get in earlier). He is also scheduled for a swallow study at that time. All of these tests are to try to determine if there is a cause for the pulmonary hypertension, which would then be called secondary pulmonary hypertension. Once they have gone through all of the testing, if they can't determine a cause it is then called primary pulmonary hypertension. It would be much better if a cause (that is fixable) can be found. From the healthatoz website:
Prognosis
Pulmonary hypertension is chronic and incurable with an unpredictable survival rate.
Length of survival has been improving, with some patients able to live 15-20 years
or longer with the disorder.

This evening Jesse's cardiologist called. She had talked to Dr. Ivy (the pulmonary hypertension specialist). We are again increasing Jesse's medication (Sildenafil). Orders are in for the cardiac catheterization, so that will probably happen before the sleep study. She is trying to get Jesse in to see a pulmonologist this week, or sometime soon - I told her I didn't want to wait until the July16th trip to Denver.

I've been thinking about all that has happened since Jesse's birth. I was comfortable in "Holland" and glad to finally get out of "Siberia" and now trying to think where I can liken our current situation to and can find no analogy. I know it isn't somewhere I want to go. But I am trying not to fear for Jesse's future and to trust God, wherever He takes us.

Where He Leads I'll Follow
William A. Ogden, 1885
http://www.cyberhymnal.org/htm/w/h/l/whlifoll.htm

Sweet are the promises, kind is the word,
Dearer far than any message man ever heard;
Pure was the mind of Christ, sinless I see;
He the great example is, and pattern for me.

Refrain
Where He leads I’ll follow,
Follow all the way.
Where He leads I’ll follow,
Follow Jesus ev’ry day.

Sweet is the tender love Jesus hath shown,
Sweeter far than any love that mortals have known;
Kind to the erring one, faithful is He;
He the great example is, and pattern for me.

Refrain

List to His loving words, “Come unto Me”;
Weary, heavy laden, there is sweet rest for thee;
Trust in His promises, faithful and sure;
Lean upon the Savior, and thy soul is secure.

Refrain

I'll keep you updated as to our further appointments. We thank everyone for your continued prayers!

Kristan

Pictures from Aunt Kim

Aunt Kim is posting some images from our recent trip to Colorado. Jesse is so darling! He is just a happy, full of life baby. He smiles easily and his face just lights up ... as you can see! Aunt Kim's son, Daniel, is 3 weeks older than Jesse. They had fun playing together.

May 22nd Update

Thursday Jesse went in for a cardiology check-up with Dr. Villavicencio at Children’s Hospital. It had been 2 months since his last appointment so we were hoping to see improvement in his pulmonary hypertension, but the echo actually showed it had gotten worse. The first step is to increase his medication (Sildenafil) because he was still getting the dose for being 12 pounds. (He is now 16 pounds 3 ounces and 27 ¼ inches long!!!). Then we will go through a lot of other doctor visits and tests to try to determine what is causing the pulmonary hypertension. A primary cause was the heart defect, but since that has been repaired it should be getting better. So now they will try to determine if there are other causes (such as apnea, large tonsils, obstructed airway, lung disease…) Jesse is scheduled to see a pediatric ENT (Ear, Nose, Throat) doctor on June 11th. He will have an overnight sleep study, but they are booked until August. They would also like a swallow study, upper GI, chest CT scan, and cardiac catheterization. The cardiac catheterization and CT scan require a general anesthesia so we will try to schedule those together. Sometime Jesse will be seeing Dr. Ivy, the pulmonary hypertension specialist, and maybe a pulmonologist (lung specialist.) All of these are not definite at this point. We are increasing his medication and will probably redo the echo the week of June 10th when we are in Denver. It is possible that this is a false alarm, and all due to a cold he has had, so maybe all will be better then. But Dr. Villavicencio really felt that this far out from surgery we should have been seeing improvement.

Jesse appears to be doing great, gaining weight well, and also gaining strength. He has more head control and raises his head better when on his stomach. He is almost always very happy and content. On the outside he appears so healthy, it is hard to believe something so serious can be going on inside his body. Please pray for wisdom for the doctors and for us in making decisions about his care.

Love,
Kristan


The LORD is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. (Psalm 28:7)

A Couple Pictures of Jesse

Jesse is continuing to grow well and is over 15 pounds now. He has been somewhat sick for about a week now - vomiting ocassionally, runny nose and coughing (usually when eating, or when he wakes up.) But he has not had any fever. He seemed to be a little better today, but I guess if he is still coughing on Monday I will take him into the doctor. The rest of us have all gone through various symptoms. Sam has had it the longest, and it looks like Chad just started today with an upset stomach, chills and headache. Please pray that we can all get over these colds.

Love,

Kristan

Jesse and Penny

Here are a couple pictures of Jesse with Grandma & Grandpa's new dog Penny. They seem to really like each other!

Gaining Weight

As of Thursday, April 17th Jesse is officially 14 pounds 8 ounces - so he is back to gaining weight. That is great news and he is even starting to outgrow some 3-6 month clothes. He has tried quite a few foods now: rice cereal, oatmeal, carrots, grean beans (which he threw up), potatoes, yogurt and bananas. And I am adding a new one every few days. I will be out of breast milk by tomorrow, so he is on the 22/calorie formula.

His new "trick" is playing with his feet. After a little encouragement with foot rattles, he has figured out how to grab his feet and now does it without the foot rattles. He rolls around a lot and is getting stronger in his upper body. He sits up pretty well in my lap, but has quite a way to go before he will be able to sit up on his own. He holds his head pretty well when on his stomach, but doesn't push up on this arms yet.

His oxygen level may be improving, slowly. It seems to go down to around 82-85 at night, but sometimes stays above 86 (that is where the alarm is triggered).

He continues to be a very happy, content baby with the cutest smile.

Love,
Kristan

God's Continued Provision

We continue to be encouraged and amazed by God's provision for Jesse's needs. We had a significant bill from Jesse's Flight for Life to Children's Hospital when he was born, because our insurance only paid a portion of it. We had applied for an assistance program through the Flight for Life's "charity department." Yesterday morning Chad had asked me if we had heard anything about that bill and I said "no." Then Collin came in with the mail. I saw the bill, and thought it was probably just the monthly bill, but when I opened it, it showed a $7,533.10 "adjustment". Chad called to confirm that this was what the charity deparment had credited to our account! Today I was able to write out a check for our co-pay on the Flight for Life so that it is now paid off. We are so thankful for the many ways God has worked to help with the Jesse's financial needs!

Love,
Kristan

Beans

Last night Jesse had his 2nd vegetable - green beans. He actually seemed to like them. But a couple hours later he seemed a little unhappy and then threw up - a total of 5 times. I don't know if it was due to the beans, or if he had some type of stomach virus. He seems fine today. I guess I won't feed beans again for a while. Otherwise he seems to be doing quite well. I'll try to remember to weigh him again soon and see if he has gained any weight.

Love,
Kristan

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

Check-Up on February 19th

Yesterday we went back to Children's Hospital for a check-up. The best news was that the chest x-ray showed no fluid accumulation. Jesse has also gained about a 1/2 pound in the last week. He did have a stitch near the top of his incision that never came out and had become infected, so the doctor had to cut it out, but Jesse did very well. He is on antibiotics for 5 days. We don't have to go back to Children's again until March 20th and Jesse can go back on his normal diet March 6th. Well, I have to go get the kids up and ready for a school day. I'll try to periodically update what is going on with Jesse.

Love,
Kristan

Happy Valentine's Day!

We made it home yesterday and wanted to wish everyone a Happy Valentine's Day!

GOING HOME!!!

It is Wednesday, February 13th and Jesse is discharged! Chad is on his way and we will be heading home this afternoon. Praise God for the miracles he has done in our lives. We are so excited to be going home.

Love,
Kristan

Tuesday, February 12

Jesse's chest x-ray was great today. Last night Jesse's heart rate was fast, his oxygen was lower and he had a low fever, but tonight he is back to normal and his oxygen is great! They did blood tests that did not show any infection, and checked his potassium which was perfect. They cut back his Lasix to twice/day. So we will have a chest x-ray in the morning and will go home either tomorrow or Thursday if all continues well.

Love,
Kristan

Maybe Thursday???

Today the doctors said we might be able to come home on Thursday. They are not doing a chest x-ray until tomorrow. Jesse's oxygen sats have been stable. They turned down the oxygen to 1/4 liter, so his sats are a little lower, but they just want to keep him above 90. They are discontinuing 1 of the 3 diuretics today, and maybe weaning back on the other 2 so they want to watch him for a couple days to see how he does on that. He has been eating and sleeping well, and rolling "all over". Last night while we all went to dinner the nurses weren't able to leave him in his crib because he rolled so much and takes out his oxygen. But I think they enjoyed getting the chance to hold him and had him out at the nurses station when we returned. I have enjoyed getting to know a few of the nurses pretty well and am more comfortable leaving for short periods of time.

Chad and the boys will be heading back home this afternoon, so hopefully the next trip here will be to pick us up for the trip home!

Love,
Kristan

Sunday, February 10th - ONE MONTH

Well, we have been at Children's Hospital for one month now. It is hard to believe. Sometimes it feels like "forever" and sometimes I can't believe it has already been that long. Yesterday we had some issues with Jesse's PICC line. Since he had so little medication running through it, the line clogged. The nurses spent a few hours working on it and managed to get one port working (there are 2). So they were able to continue the Octreotide until today as planned. It was shut off a couple hours ago, but they still have fluid running through the line in case they need to start meds again. Jesse is doing great eating and his oxygen sats are good. He had a chest x-ray this morning and will have one tomorrow to see if any fluid starts accmulating. He had a great night last night - had his last bottle around 7:00pm, fell asleep around 9:00pm and didn't wake up until 5:00am! He is now drinking between 2-4 ounces each feeding with just a little spitting up.

Chad called and is on his way with the boys for a visit. I'm excited to see everyone again!

Love,
Kristan

For you, O LORD, have made me glad by your work;
at the works of your hands I sing for joy. (Psalm 92:4)

Pictures

Here are a few pictures of Jesse and the boys over the last week. He seems to be growing. His weight is basically the same as when we first came to the hospital - now 12.2 pounds. He ate well through the night and this morning!!!

Kristan

Thursday, February 7th Update

Today Jesse got his first bottles of formula again. Unfortunately it was too much for his stomach and he threw both of them up this morning. So through the afternoon I have been giving him small amounts of Pedialyte and Portagen. From 1:30-5:30 he has now kept down 1 1/2 ounces of Pedialyte and just over 1 ounce of Portagen. I'm happy he has kept it down and he does seem a little happier. He was very tired and slept most of the day. But, he needs to drink a lot more. I think the doctors wanted him to drink 15 or 18 ounces of Portagen per day! They cut the TPN in half and I think are planning to turn it off tonight. But then he would probably have to be on IV fluids until he is drinking enough. Also the blood tests this morning showed his hematocrit was low (30). So he will get some iron tonight. I hope that doesn't upset his stomach. But if it goes much lower I think the next option is a blood tranfusion. The chest x-ray today looked good, and now he will be getting one everyday again to make sure there is no reaccumulation of fluid. Keep praying for this process as we transition back to eating again.

Love,
Kristan

Wednesday, February 6 Update

Collin spent last night here at the hospital and then all the boys were here for lunch today. We got to play a while in the playroom. Then the Bromptons came for a visit and took the boys home to Crook. Jesse and I walked downstairs to see them go. It was hard being left behind. I really hope we are able to go home next week.

Jesse will start on Portagen formula sometime tomorrow. Then if that goes well with no chest drainage, they will discontinue the Octreotide on Sunday. Then we will pray that the drainage doesn't resume and we would be able to go home sometime next week! If the drainage comes back I think we will be looking at surgical options (Dr. Mitchell advised a procedure called "pleurodesis".)

Thank you everyone for all of the cards, e-mails, and packages!

Love,
Kristan

"New" Laptop

I am posting from our room on my "new" laptop - a wonderful surprise that arrived in the mail today. Thanks Kim and Bill!!! It is one of their old computers and is missing a few keys, but has a wireless internet connection that is working great! Now I have no excuse for not keeping everyone up to date.

I have enjoyed my days with the boys. Samuel and Chad stayed Sunday afternoon. Matthew stayed Monday, and ended up spending the night because of the slick roads. And Collin is here today, and spending the night because Matthew got to... We have had fun playing lots of games and getting ice cream at the coffee shop. I got to talk with boys about what they have been doing in school, and review a little of their work. I'll miss them when they go back home tomorrow.

Jesse continues to do well, mostly just fusses when he gets hungry. I can't wait until I can feed him all he wants again. Pedialyte isn't very satisfying so he wants to eat very often. I am thankful that he is sleeping all night!!!

Love,
Kristan

The Lord looks on the HEART

While I was working on making the video for Jesse, I was reading this passage about King David's father (Jesse) in the Bible. I was overcome when I saw this famous verse: For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart.

Isn't that written just for Jesse?!

Many people may judge Jesse by his outward appearance, but God looks straight at his heart. And, isn't it soo cool that it says HEART, not "character" or "behavior." God has given Jesse both a physical heart and a spiritual heart. I pray that He will be glorified in healing Jesse's physical heart, as well as giving him a heart that is fully devoted to God.

We love you, Jesse. I'm praying that you'll be home for Valentine's Day - our little heart baby ;0

Aunt Kim

1 Samuel 16:6-13

"When they came, he [Samuel] looked on Eliab and thought, "Surely the LORD’s anointed is before him." But the LORD said to Samuel, "Do not look on his appearance or on the height of his stature, because I have rejected him. For the LORD sees not as man sees: man looks on the outward appearance, but the LORD looks on the heart."

Then Jesse called Abinadab and made him pass before Samuel. And he said, "Neither has the LORD chosen this one." Then Jesse made Shammah pass by. And he said, "Neither has the LORD chosen this one." And Jesse made seven of his sons pass before Samuel. And Samuel said to Jesse, "The LORD has not chosen these."

Then Samuel said to Jesse, "Are all your sons here?" And he said, "There remains yet the youngest, but behold, he is keeping the sheep." And Samuel said to Jesse, "Send and get him, for we will not sit down till he comes here." And he sent and brought him in. Now he was ruddy and had beautiful eyes and was handsome. And the LORD said, "Arise, anoint him, for this is he." Then Samuel took the horn of oil and anointed him in the midst of his brothers. And the Spirit of the LORD rushed upon David from that day forward. And Samuel rose up and went to Ramah."

Welcome to Siberia!

Upon finding out that Jesse had Down Syndrome, I was given a story called “Welcome to Holland.” I’d encourage you to read it at – http://www.ndsccenter.org/resources/package1.php The author had a child with Down Syndrome and she compares her journey as a mother to a child with special needs to taking a trip to Holland when you’re expecting to go to Italy.

I thought I was adjusting pretty well to life in Holland and was enjoying all the blessings that were found there. Then the doctors scheduled a “week-long trip” to Siberia, a place that no one wants to go. Now, three weeks have gone by, and the planes leaving Siberia keep leaving without me.

Siberia is a bleak, cold and lonely place. There are moments when the sun comes out, but then a new blizzard hits. I have found, though, that even in this cold and dreary land, God is here.

Psalm 139:7-12
“Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, "Surely the darkness shall cover me,
and the light about me be night,"
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.

I think God wants me at the point where I can accept that I may have to take up residence in Siberia. He wants me to trust Him, no matter where He takes me. He wants me to know that He is with me, no matter where I am.

Ten days before Jesse’s surgery, I shared my testimony with my church. After sharing how I came to know Christ as my Savior, I concluded that God gives us more than we can bear to make us rely on Him. I compared my experiences to Paul’s in his letter to the Corinthians.

2 Corinthians 1:8b-10 “For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again.”

Little did I know how much more difficult life was about to become. In the last few weeks, I have repeatedly felt there is absolutely no way I can handle any more. Then I realize that I’m feeling that way because I’m trying to do it in my own strength again.

Philippians 4:12-13 “I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through Him who strengthens me.”

Unfortunately for me, I’m not a very good student and God has to keep teaching me this secret over and over again.

Another lesson God is teaching me right now is that my faith needs to be active. When He tells me “fear not” (Isaiah 41:10), or take up His yoke (Matthew 11:28-30), or wait for Him (Lamentations 3:25), or trust Him (Isaiah 30:15), these are active commands that don’t just happen on their own. I have to choose to do them and God will give me the strength to obey.

Earlier today I was reminded of the story of Mary and Martha in Luke 10. I hope I will not be anxious and troubled like Martha by all of these burdens that are too much for me to bear. I pray that instead I would be like Mary, choosing the good portion and sitting at the feet of Jesus – wherever God takes me – whether it be Italy or Holland or Siberia.

Whether you find yourself in Italy or Holland or Siberia, may the LORD make his face to shine upon you and be gracious to you,
Kristan

P.S. No new blizzards today. Jesse continues to do very well. Thank you for your prayers!


Sitting at the Feet of Jesus
by J. H. and Asa Hull

Sitting at the feet of Jesus,
Oh, what words I hear Him say!
Happy place! so near, so precious!
May it find me there each day;
Sitting at the feet of Jesus,
I would look upon the past;
For His love has been so gracious,
It has won my heart at last.

Sitting at the feet of Jesus,
Where can mortal be more blest?
There I lay my sins and sorrows,
And, when weary, find sweet rest;
Sitting at the feet of Jesus,
There I love to weep and pray;
While I from His fullness gather
Grace and comfort every day.

Bless me, O my Savior, bless me,
As I sit low at Thy feet;
Oh, look down in love upon me,
Let me see Thy face so sweet;
Give me, Lord, the mind of Jesus,
Keep me holy as He is;
May I prove I’ve been with Jesus,
Who is all my righteousness.