Happy 12th Birthday Gideon! We are so proud of how awesome he is doing. He made it through a round of pneumonia with no further apparent lung damage. It looks like this summer we will be able to get back to enjoying some outdoor activities in Idaho such as camping, hiking, and just being free this summer.
While his lungs are doing while, Gideon is still struggling to gain weight consistently. We are doing enzymes, probiotics, herbal supplements, essential oils, and everything we can think of. His appetite has improves ome, but he is still not gaining weight like a soon-to-be teenager should. Please pray that his body continues to get the nutrients it needs to heal, and that he will reach a tipping point and accelerate in growth.
And, I haven't forgotten about the T-shirts. Hopefully I'll get some time this summer to sit down and get them out!
I'm having trouble posting images, but the link below is Gideon after donating his hair in honor of his friend Lula. We all miss her greatly still.
Gideon has had a cough the past several weeks that would not go away. Despite that, he had remained fairly active and his oxygen levels were good until last night. His levels dropped down to 90% and his heart rate went up. We couldn't get an appointment with his pediatric pulmonologist because he is booked solid, even through his lunch breaks. Our general practicioner said it sounded like pneumonia and so Gideon is on antibiotics and stereoids. We are scared because his lungs don't have any room for further damage.
Please pray that the pneumonia would not spread and that it would go away quickly. And by away...I mean far far away.
On a lighter note, we would like to start a t-shirt campaign to raise funds for Gideon's on going care. If you have any creative ideas/slogans/drawings related to children and lungs, please let us know. Here are some I came up with, I'm sure you can do better:
- "I Breathe For Gideon"
- "No One Breathes Alone" (front) - "Gideon's Mighty Warriors" (back)
- "Every Breath is Magic"
- "My lungs suck." (front) "Lung disease blows." (back)
- "Would you smoke if you knew it could kill me?"
- "My Breath comes from Above" (front) "Gideon's Mighty Warriors" (back)
It's time for a general update on Gideon. The bad and the good are below:
-On January 19th, Gideon had a very important PFT (pulmonary function test) that we where hoping would show significant improvement in his lungs. While there was some improvement in lung volume, the critical FEV1 test did not show enough statistical improvement to move him out of the range where he is considered a possible lung transplant risk. This is discouraging as it solidifies the fact that for the forseeable future Gideon may not improve much beyond where he is now. While we are incredibly happy that his daily qaility of life is more normal, we would like him to show continuous improvement.
-The first real test of Gideon's lung through a sickness seems to be over. He had bronchitis which required two rounds of antibiotics to tame. Our big concern was that it would spread into his lungs, turn to pneumonia, do more irrepairable damage, and ultimately drive him to a lung transplant. Thankfully, he seems to have fully recovered and not suffered any long term damage. This is a HUGE relief as it shows that his body can fight pulmonary illnesses.
-Gideon's weight is the other big problem we are fighting now. Over the past year he has hung around 50-54 lbs. At most he would gain half a pound per week, and then lose it. He has been working towards reaching 56lbs in order to get a certain prized Pokemon book. Over the past three weeks he was slowly creeping up to 56, and then on yesterday's weigh in he was at 57.3 lbs! This is the heaviest he has ever been. Be prepared for when he hits 60lbs, we are going to throw a big party!
-We are coming up on a year when Gideon's good friend, Lula, left us because of cancer. Pray for him, our family, and Lula's family as we all miss her.
-Be on the lookout for news of a benefit T-shirt for Gideon. More news soon to come.
Thanks again for all the support, financial and moral. Your financial support helps us keep up with the monthly costs of stuff our insurance won't cover; nutritional drinks to keep his weight up, homeopathic doctors, essential oils for pain management and pulmonary improvement, medical equipment odds and ends, etc... We continue to move in a positive direction thanks to all of you!
It was about a year ago that we started asking folks to support us through Youcaring.com. Last year on Christmas Eve we were flying home from Cincinnatti Children's Hospital with Gideon thanks to everyone who gave. We are so grateful for everyone who has supported us and brought us through the year. We have still have many challenges and unknowns, but it feels doable most of the time. We have seen Gideon make great progress and are praying that he defies the prediction that his lungs will always be on the verge of needing a transplant. Your support keeps us afloat!
I'll leave it to Lynn to close out the year:
It's been a tough year but one of such amazing growth. Looking at the pieces FB put together, it had me in tears. Right now, Christmas Eve, I remember a year ago today when Andy, Gid and I were released from the hospital that morning and flew home in time to see our other four boys on Christmas eve. I look at where we were then, not knowing if Gid would be with us from week to week and I'm so incredibly grateful for not just how he is doing, but where our hearts are as a family.
I remember purchasing ticket after ticket to see the specialists in Cincinnati and being humbled at the crazy way all you guys have supported us in SO many ways. We didn't need to worry about the plane tickets, hotels, and other expenses because you've lifted us financially as well as emotionally, spiritually, and physically. When I had to leave my other four boys in order to treat Gideon, I knew they were being loved, entertained, and even spoiled. We are loved and you guys have been God's hands and feet, carrying us when we couldn't walk.
I see the pictures of us dressed up for Lula's funeral and the wind is knocked out of me. She was a priceless rarity, gave so much to us, and continues to strengthen Gideon and encourage us to live life fully, bravely, and genuinely.
I see these pictures of Gid, remembering how he was on supplemental oxygen 24/7, wheelchair bound, being carried from house to car, unable to walk even to the bathroom, and I can't give words to how grateful I am at where he is now. He's off oxygen 99% of the time, walks, plays, and sword fights. His good days outnumber his bad days and we picture our future with him in it. It has been such a year of loss, indescribable sorrow, tentative hope, and unexpected progress. We sit now, as always, in unfathomable grace, stripped of illusion, knowing the little control we have and resting in the hope of who holds us.
This year I pray we live fully. Love deeply. Love truly. -Lynn Perkins
Bad news. Gideon has bronchitis. He is on antibiotics as a necessity, but we fear it will set back the progress we have made on his digestive system.
The persistant dry cough that started the lung problems over a year ago is back. If the bronchitis turns into pneumonia then it most likely will do more damage to Gideon's lungs, and he has no margin for more damage. Please pray that the Bronchitis passes quickly and that it does no damage to his lungs.
Every time he coughs it's a horrible remember of how vulnerable he is. His spirits are good, but Lynn and I are struggling to keep the dark thoughts away. We have to take it day by day again. Actually it's more like cough by cough. I at least get a break while I'm at work, but Lynn is with it all day. Pray for her peace to hold up.
I know it's been a loooong time since I've posted an update. Here are a few highlights:
- We've had several good months with Gideon's breathing stabilizing, and some gains in his eating. His appetite has improved, but he is still struggling to gain weight. He is on enzymes, probiotics, and numerous supplements.
- We are going to hold off on the feeding tube for now, but it still is a possibility for the future. Please keep praying that his digestive system heals and that he starts gaining weight.
- The severe, random nerve pains are less frequent, allowing him to get a full night of sleep most nights.
- His wheelchair use is down significantly. Many times he chooses not to use it. I wish we could get rid of it permanently, but I don't see that happening yet.
- He's been able to go to our homeschool co-op on Thursdays and last the whole day. He is participating in his classes and enjoying being with friends again.
- Your financial support continues to be a blessing. Andy's employer is switching insurance plans for 2015 and the deductible and out-of-pocket maximum will double from this year. We are praying Gideon won't need any major surguries/hospitilizations next year so that we don't meet that out-of-pocket maximum. The conventional doctors have said they can't do anything more for Gideon. So, we are doing alot of therapies, essential oils, and supplements that are not covered by insurance so our medical expenses still are significant. We appreciate everything that has been and will be given to help us fight with Gideon.
- Gideon has a specific prayer request. He would like to be able to carry his backpack again at Co-op. Right now the weight exhausts him too quickly. Pray that his strength continues to build, and that his lungs keep improving in functionality.
Here is a Facebook update from Lynn to close out:
"Good news and bad news. Let's start with the bad and end with the good.
Gideon's come down with a yucky cough in the last two days. It makes me want to vomit. The cough that started this all in Spring of 2013 seemed not so bad. No fever, not horrendous sounding, but extremely damaging. It was so atypical it caused the pneumonia to be missed by the doctors. So I'm trying desperately not to let my fears take over with the "what-ifs" and emotional nose-diving. That cough puts me right back in all those hospital rooms and sleepless nights holding my baby, not knowing how much longer he's going to live. *sigh*
Now, good stuff. Gid's been doing SO well the last few weeks before this cough. His oxygen saturation is almost always in the normal range, his resting heart rate is lower, and his activity levels have been AH-mazing. Even with the cough his oxygen saturation is within the normal range.
We spent a week with family for Thanksgiving and the things he was doing Blew. My. Mind. He was going up and down stairs like a boss, tubing behind a four-wheeler, and taking very few breaks to catch his breath throughout the day. Not only so, but he's been hungry on a consistent basis, which hasn't happened since spring of 2013. We've been super excited at his functioning level.
I'm trying hard to not let fear spiral out of control. One thing I've gotten a little better at lately is releasing the illusion of control. It's one of those things I have a feeling I'll be learning over and over again for the rest of this life."
Thank You to Chattanooga Christian School and the class of 1994 for contributing to Gideon this week. Lynn regrets she couldn't be there this week to be part of Homecoming and see her friends and family.
Your donations will continue to help us find answers to Gideon's weight issues and persistant nerve pain. He hasn't gained any substantial weight in a year, and his appetite is almost nonexistent. We are seriously considering putting in a feeding tube before the end of the year, as well as pursuing alternative doctors and therapies which insurance does not cover. Anybody who has gone this path knows how expensive it can get.
His lungs have stabilized for the moment, but he has zero margin to lose anymore capacity. We are playing the balancing game of balancing his quality of life/social interactions with exposure to colds and bugs.
Thank you for continuing to keep us in your prayers and supporting us.
-There is an online Scentsy fundraiser for Gideon on Wednesday, August 27th at 6pm (I think) Mountain time. They are coming out with new Unicorn and Dragon Buddies that would make a great addition to Gideon's stuffed animal collection. Email me at firstname.lastname@example.org if you would like an invite. I believe you need a Facebook account.
I apologize for not updating here earlier with a rundown from the 6month checkup at Cincinnatti Children's Hospital. Basically, there isn't a whole lot to report. We feel like the IV steroids have stabilized his lungs, but that the there is general inflammation and pain that we can't pinpoint the cause of.
- On the lung front: Gideon's PFT tests haven't improved at all, so it's a wait and see what happens over the next 6months to year. We will continue to track his breathing and lung performance. We will continue to stay in touch with the lung transplant team in case anything changes.
- On the GI front: We continue to struggle to put weight on Gideon. GI is talking about putting a feeding port in if he doesn't gain sufficient weight over the next couple months. Here is an update from Lynn:
" I know I really need to post a Gideon update but I've been processing a bit and putting it off. One thing we're working on at a higher level is getting him to gain weight. The doctors want to see him putting on about a pound a week. I'd be happy with half that. We've got about 2 1/2 more months for the docs to see a good increase and then we're looking at getting a feeding tube. One of those things he wears 24/7 through his nose, taped to his cheek.
Recent testing has shown more inflammatory markers and signs of gut issues.
Since we've increased his caloric intake he's thrown up four times in the last week. His body just doesn't want the extra food.
Unfortunately all these articles and meetings with nutritionists haven't given us more ideas. We know the high cal/good fat foods. The problem is getting them in and getting them to stay down. We have a med we used during treatment side effects and it not only dealt with his nausea but also MADE HIM HUNGRY. But we hate adding more meds with yet more side effects. We're hoping to use it a short while to hopefully increase his stomach capacity then see what he can do without it. Please be praying Gid's appetite will increase dramatically and he will stop throwing up the food he is able to get down."
At this point we will explore alternative therapies to stop the general inflammation present in his body, and find out the source of his nerve, bone, and tissue pain. All tests so far haven't pinpointed anything, just a general inflammation in his body.
The text below is from Lynn's Facebook. Enjoy.
So. I'm up starting to pack for our upcoming trip to Cincinnati. Gideon, Isaac, and I are scheduled to leave 10:30 Saturday morning. Ike is beginning to get better. We're still alternating ibuprofen and Tylenol but his fever is staying normal, even when meds start to wane. He was a bit more active tonight and the twitching is almost completely gone. Gid is very tired and was hurting a lot tonight. The math camp he's attending is a half day, four days in a row and I'm hoping it isn't pushing him too much right before the trip. Andy is hurting but actually went to bed tonight instead of staying up working on the house siding.
Gid's up and down. He'll have really good days, then really painful days. He has spurts where he's pretty active with his friends, even running a few feet here and there, but not only does he exhaust easily, having to take frequent breaks, but he usually pays for the activity in pain later that night and often days after.
This trip is going to be a whirlwind trip of meetings with the experts in various fields like Pulmonology, immunology, GI, and so on. We'll meet with the lung transplant team to get their input and discuss "long term prognosis" and other fun stuff. We'll discuss the success of treatment (or relative lack of) thus far and hopefully come home with a plan of treatment for the next six months or so.
When first measured after Gid got sick his lung function was at 20% and he collapsed 50 seconds into the six minute walk test. At this point he is able to finish the walk test but is usually exhausted, and his lung function numbers have stayed stubbornly at 25-27% for several months now. All the studies (only on adults, & usually CF patients) show if lung function is above 30% you usually have a greater chance at life without a lung transplant, but if function is below 30%, you usually live longer WITH the lung transplant, even with 5 year survival rates being only 50%. But Gid has been at peace and clear from the beginning that he didn't want a lung transplant. He feels if God is going to heal him it will be with his own lungs and that if he's not going to be healed he doesn't want to go trough all that just to buy a little more time here. As he said, "I'd rather just go home."
That being said, we feel hopeful about having him around here a good bit longer. His lung function numbers aren't budging, but we see good improvement in his stamina, in his daily oxygen saturation levels and in how very infrequently he needs supplemental oxygen these days. 6-7 months ago he was on supplemental oxygen 95% of the time. These days he's OFF it 95% of the time! He's slept with oxygen only one time this last month and needed it in the day for a few minutes maybe once or twice. He is not a well boy, but he is so much further than nine months ago when I didn't know if I'd have him from one day to the next.
And above all else, his heart is amazing. He has grown emotionally and spiritually this last year beyond anything I could describe. His faith, peace, and assurance is humbling. I've told many people about how I always wanted my first son named Isaac but when we found out we were having Gid we knew he wasn't Isaac, and we were certain he was Gideon. We were questioned by some as to why we would name our boy after such a faithless weakling. And that's exactly why. Because in the middle of our helplessness, our weakness, even our faithlessness, he comes and greets us as "Mighty Warrior". Not because we are strong, but because His power is made perfect in our weakness. And we see that promise played out daily in our Gideon's life. The weakest of weak who, when he chooses to submit to God's goodness in the baffling, excruciating pain, rises a Mighty Warrior. I remember vividly the moment last year when I saw that transformation. We didn't know if he would be with is from day to day and I was a sobby mess, but he looked at me calmly and spoke. "I know God could heal me with a miracle. Or he could use the doctors to heal me. Or I could go home to heaven. No matter what, I win."
Tremble, oh forces of evil! Because this four foot, fifty pound warrior comes armed with faith and assurance! And no matter how this ends, he wins. — Lynn Perkins
It has been incredibly busy since our last update when Gideon was getting his IVIG treatment. Here some updates:
When people ask how Gideon is doing, we generally say something like: "He used to be on oxygen 95% of the time, now he is off of it 95% of the time." Instead of a large oxygen tank on wheels, he uses a small oxygen in a backpack. I can't remember the last time he had to use supplemental oxygen at night. This is a huge blessing and let's us sleep better at night.
However, the random pains continue to haunt Gideon. He describes them as piercing, stabbing, being bitten, burning skin, and sometime aches in his bones and joints, and what appear to be migraines. We continue to up his amitryptiline (currently 40mg) to see if there is a threshold at which it helps. So far, it has reduced the number of nights he is up screaming foe hours, but he is still dealing with excruciating pain. Continue to pray that this pain just goes away, or we find its source.
Gideon's six month checkup in Cincinnatti is only a few weeks away. Instead of me accompanying them, Isaac is able to go this time. He is pumped about being there to help his brother and finally see the hospital and doctors that have been treating him. We will be checking in with pulmonology, GI, cardiology, immunology, lung transplant, and several others. Hopefully we can get him off some of the GI medicines and antibiotics.
We continue to receive great gifts and support in the mail. It's still greatly needed, thank you.
In other family news, I will be traveling to Boston with Isaac and Phineas to celebrate my grandfather's 90th birthday. It will be a grand adventure traveling there, and a relaxing time with my extended family. Lynn will be staying in Boise taking care of Gideon, Atti, and Niam, by herself.
In case you thought we were slacking this summer, we were finally forced to come to terms with the state of our house siding. It needed attention. Lacking the funds (and sanity) to pay someone to do it, I am spending my nights and weekends redoing our house with beveled cedar siding. This means 12hr days in 100 degree weather to get at least 2 sides done before the end of summer. On the plus side, we get to paint the house. The boys have had fun picking color schemes.
Thank your for continuing to give financially as you can. Your gifts have made us able to provide medically for Gideon. Your past gifts have kept us in good shape to provide medically for Gideon, however this trip is going to be more expensive than past ones because the Ronald McDonald House is full at this time. Lodging and food for a week is under $200 when we can stay there. Instead, we will be looking at at least several times that in hotels plus food and other miscellaneous expenses.
We are grateful even if we can't always vocalize it!
Andy and Lynn Perkins