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