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.
Tuesday, September 30, 2008
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.)
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.
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.
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
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
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
Love,
Kristan
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