Our Blessing Named Jesse

Jesse Quintin was born September 26, 2007, the much-loved fifth son of Kristan and Chad. He was diagnosed shortly after birth with AV Canal Heart Defect and Down Syndrome. Thursday, January 10th, Jesse had surgery to repair his heart defect. Friday morning he suddenly went into cardiac arrest. After 45 min. of CPR he was attached to life support. By God's healing hand his heart started to beat again and he came off life support on January 13. We created this blog to keep everyone updated.





Sunday, December 28, 2008

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

Tuesday, December 16, 2008

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.

Saturday, December 13, 2008

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

Wednesday, December 3, 2008

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)

Sunday, November 9, 2008

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

Sunday, October 26, 2008

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

Tuesday, October 7, 2008

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

Monday, October 6, 2008

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

Saturday, October 4, 2008

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

Thursday, October 2, 2008

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

Tuesday, September 30, 2008

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.

Friday, September 26, 2008

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

Saturday, September 20, 2008

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

Tuesday, September 16, 2008

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.
.
Saturday, September 27th
1:30-4:30pm
The Berean Church
12527 County Road 37
Sterling, Colorado
.
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

Saturday, September 6, 2008

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

Sunday, August 31, 2008

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