Here’s the Kramer update
Monday-I took off childcare and drove Kramer to his appointment. Chemo and radiation all went well. He was feeling good.
Tuesday-Our friend drove to radiation. He went to working the morning for a few hours. He has an oxygen pack. It had four hours of charge to it. I’m thankful for only 4 hours as it makes it hard for him to work any longer than that. We started oxygen overnight now too as he has been waking up with headaches.
The rest of the week he has some farmer friends driving him so I have a break.
The Gannon report…This comes directly from Kalissa:
“Well this isn’t where I expected to be. It is a long story but I’m here now.
I’m going to start with the good news:
Gannon does not have Hirschsprung’s disease.
Gannon is doing much better. This morning they came in and clamped his NG tube and stopped his IV fluids to see how he would do. He is tolerating both well.
Another piece of good news is we should be going home in the morning.
Now I’ll tell you the okay news:
They *suspect* Gannon is allergic to milk protein. Gannon has been in a trial of Alementum milk replacement while he is here and it’s has been going well. This is a very expensive fancy hypoallergenic formula.
This means I either have to completely cut dairy and soy from my diet – no exceptions – to breastfeed him or I have to be done breastfeeding. This absolutely and completely breaks my heart. I’m not quite ready to talk about how much that upsets me.
Gannon does have some abnormal anatomy towards the end of his digestive tract which they *suspect* in combination with the *possible* milk protein allergy caused his problems. This can be treated with simple dilation.
Do you notice how many *maybes* are involved in all of these *possible* diagnoses?
I’m frustrated. I’m sad. I wanted a definitive answer. I didn’t want thousands of dollars workup to be told to switch to formula. I don’t want to quit breastfeeding.
I’m thankful Gannon is feeling better. I’m thankful we will be able to go home. I’m thankful it was nothing serious.
Mixed emotions here tonight. We will continue the trial of Allimentum through the night and make sure he tolerates feedings. We will likely head home in the morning. Supposedly he is fixed. Supposedly he will be fine but my mom gut still isn’t all the way convinced. Stay tuned.”
I am not super confident about the diagnosis. I think Kalissa will be taking one blog reader’s advice to have the chiropractor have a look at Gannon. We have a great chiropractor and she’s reasonably priced so why not?! I just feel like the doctor’s never saw him when he was screaming and obviously in pain. They didn’t see those grossly obtuse belly moments. Oh well, we will try this and hopefully it will be the trick…I’m also a believer that prayer is playing a part in him feeling better. Time will tell. I just can’t wait for him to be home.
As for me personally….
I had a melt down on Tuesday after childcare. I’ve not had sleep for the past four nights and it all caught up on me. I’ve had Carver a few of the nights and he has a terrible cough that only acts up over night. UGH. He coughs and coughs and I can’t sleep when he does. I had a short night of sleep Sunday into Monday as we had to leave at 5am to get to his 7am appointment. UGH. I didn’t get nearly enough sleep that night. The good thing is a recognized that it’s because of lack of sleep that I melted down so a scrambled happened here to get me some sleep. Kelli took Carver for an overnight at her house. Kramer did a few household jobs.
I’m so thankful that we all chip in to make this work. When one can’t the rest do. I cannot imagine all of this without the help of family. Kramer had a bad week last week and for me it was good week. Kelli had a rough couple days last week managing childcare and it was good for me as I could carry the load. It’s my turn to be down and although I feel bad about it, I know sleep will make it all better and I feel very loved by my family who worked to get me to bed.
My spirits were also lifted when a blog reader and friend Doreen stopped by with her husband. I’ll save that story for another day. Doreen reminded me yet again that we are not alone in this and a whole lot of you are cheering us on!! We appreciate that.
When I was up at the hospital seeing Gannon on Sunday Kalissa shared a message she got from our family friend:
It’s okay if we take one day, one hour, or one minute at a time. (A HUGE shout out to our friend Wendy Kuennen for reminding us that it’s okay if we only take one minute at a time!) We’ve been grabbing onto that statement and hanging on.
…and now I’m off to bed. I need to sleep.
Keeping you & your family in my prayers! Sleep well & take care, Jo!
Jo I am so glad that Gannon is coming home, that you are getting some sleep and Kramer is having a better week. Keeping you and yours in my thoughts and prayers. Hugs, Daisy
Thankful for the good “maybe” news. I’m sure that Kalissa would gladly give up the dairy if she could keep breastfeeding. I think a chiropractor is a good option. I’ve heard many take their babies to chiropractors. They do help.
Cherish the good with the bad and remember it is ok to have the meltdown. It makes you stronger for your family. All of this is good news and I’m so happy baby Gannon will be home soon.
Kalissa you should see if you and Gannon qualify for the WIC program if you do it might cover/provide the Alimentum formula. Each state is different but it would be worth checking out.
Continuing to pray for your family.
Here is something to try with little Carver if he is coughing a lot at night. Put Vicks Vaporub on just the soles of his feet and then have him wear socks to bed. I was skeptical when a friend suggested this to me some years ago. But I tried it and it worked. Give it a try–you have nothing to lose. Keeping good thoughts that your family will soon be well and feeling strong. Take care.
Glad to hear Gannon is coming home. Get some rest, Jo! You deserve some “Me” time. Get some when you can. Hugs!
Still keeping you in my prayers. Yes! It is wonderful when family steps in and helps where needed. I have experienced that. Our family is that way as well. You are entitled to have a melt down with everyone that is on your plate, it is to be expected. I hope they continue to work towards a better diagnosis for Gannon.
Hugs
Good news that Gannon will be able to go home but I can imagine how disappointing it was not having a definitive diagnosis. If Gannon needs the specialized formula perhaps Kalissa can check and see if the manufacturer has special coupons or programs. That could help with expenses. So glad to hear you were finally able to get some good sleep. Caretakers need to be able to take care of themselves too. It’s so wonderful that you know you can count on your family. Continued prayers for you all!
The minute I saw the photo of little Gannon with his swollen stomach, I said “he is allergic to milk.” Years ago my little brother almost died and had the huge tummy. Someone mentioned that he may be allergic to sweet milk. They started feeding him goat milk because a relative had a nanny goat. He snapped out of it and thrived. In time he overcame his allergy to milk. I am praying for your whole family as you go through this difficult journey.
I have been following your family’s challenges with Kramer and now Gannon, and my heart goes out to you all. As someone who has had to give up dairy, gluten, and now soy, as has my daughter (who is Kalissa’s age) had to give up dairy, I just want to give Kalissa encouragement that if she is willing to continue to try to breastfeed, it can be done. It will be challenging, but for a few months or a year or whatever, it might be something worth trying for Gannon. One just eats more simply and healthy, really. Meat, fish, veggies, fruit, whole/real, non-processed foods, etc. That still includes a WORLD of food choices and flavors. (PS-Almond milk is my friend. They even make almond milk yogurt and ice cream. ) If you need recipes, I am happy to share some of our favorites. We still do our weekly grocery shopping at Aldi and Walmart, just make different choices. All the best to you all as you navigate these challenges!
I am sure you have advised her of this as well, but make sure Kalissa follows her mom gut. Women’s intuition is powerful and if it doesn’t feel right, then follow through. I have a friend whose daughter is highly allergic to milk and she followed a very tough diet (mostly rice and beans) to be able to continue to nurse. Continued prayers for strength, courage, love and faith for your family. Sending hugs!
So happy that little Gannon doesn’t have the disease. Yes, please try the chiropractor (been going for years and so amazing for health all over) and try goat or almond milks. YOU must rest more — I know it is difficult — thinking of you and family. Prayers always and Hugs.
Agreed,Chiropracter is a great idea today, and sometimes allergies out outgrown!
Prayers continue for you all.
Hugs and prayers for all!
My son just turned 35. When he was an infant, I had to stop drinking milk to continue breastfeeding him. I did it for 17 months. No fun giving up milk, ice cream and cheese. But within two days of doing that, he was a changed child. Colic and baby acne both disappeared. Encourage her to give it a try. You have all been in my prayers.
Such lovely positive comments, Kallissa will find it hard to give up all dairy and soy etc, but it will be worth it to continue breastfeeding Gannon, if she possibly can. Thinking of you all and praying for good outcomes for Carver, Kramer and Gannon from Western Australia.
No words. Just sending love and prayers. And yes!…one step, one moment at a time.
More prayers coming for you and Kramer as well as Gannon and his Mom & Dad. I listed all of you in our prayers and petitions book at Mass last evening. We will continue to pray for all of you. Stay positive, and take care of yourself. God will see to your needs and answer in his way.
My daughter, now 49, had problems with milk. We put her on a banana formula available at the time and she thrived. Hope the pediatricians review all options. Praying for everyone.
Jo – I hope you had a great night of sleep! Nothing wrong with resting when the kids rest too. Traveling really does take it out of me so I am kinda glad to hear that you are a little normal :) Praise that baby is improving and since he may need an adjusted diet as he grows mama should try doing it for herself – well worth not having to mix expensive formula. I am sure that they will make the right decision though.
Kramer sounds like he is working through his busy schedule too. I am glad the oxygen is working for him. It is so nice to have the portability of it. I don’t think it use to be that way.
Jo,
I glad you didn’t mind our unannounced short visit last night. I wanted to bring Roger the chocolate dessert I promised, so we decided to go for a drive. It was so good to see how Roger is doing. His color was good and he was in such good spirits since he was able to work a few hours. We hope his treatments continue to go so well.
Georgia Grace is beautiful and so sweet! Carver is not only a good brother, but, a good cousin as well. He was so gentle with Georgia Grace. Kelli and Jason are so blessed.
We wish only the best for Gannon, Kalissa, and Craig. We hope the new diagnosis solves Gannon’s intestinal problems and he continues to improve.
Our thoughts, hugs, and prayers to all.
My granddaughter was allergic to milk as well as a number of other things. My daughter-in-law had to really restrict her diet, but said it was well worth it for a happy baby. It’s only a few months out of your life so that your child can be healthy and happy! We give up lots of things for our kids. The good news is that now that my granddaughter is 18 she has outgrown most of her allergies. She still is sensitive to a few things, so she limits those and is fine. Tell Kalissa to do what her heart tells her to do. Mom’s know best…even my pediatrician told me that years ago!
Glad the Kramer is having a good week and I hope you get some rest!
All of you are in my prayers
I think it sounds more positive than negative for Gannon. No matter whether mom chooses formula or going no dairy, she’s an A+ mom and she’ll make the right decision. If there are more challenges ahead, leave them for the future. For now, lets look at the positives and believe.
What a relief that it’s not the disease. My money is on you Kalissa, you will figure out the best way to move forward! Many prayers are being sent heavenward for you and your fam.
A friend’s daughter was allergic to cow’s milk and soy milk, but thrived on goat’s milk. It is probably cheaper than the Alementum. She could run it by the doctor. Breast feeding is great, until it isn’t.
Holding you, Jo, and your family in my heart. Take it one day, one hour or one minute at a time and don’t forget to breath.
The power of prayers in numbers works miracles! So happy to hear things are at least working out a little better. Getting the deserved rest you need is very important. I will continue my prayers for you and the family. You have to take care of yourself to be able to do the things you have been doing. A meltdown is not a bad thing sometimes. It’s natures way of telling you to take time out for your body. I am looking forward to hear more positive things happening in you and your family’s life soon. Continued prayers and Blessings to you and your family!
Goodnight, sleep well Jo, you deserve it with everything that has been going on. So glad to hear Gannon is going home and lets hope they have the right diagnoses and he continues to thrive. Prayers for all
Dear Kalissa
Do not feel upset about not being able to breastfeed…way too much pressure is put on mothers about this. Do what is best for baby Gannon. As for cutting all diary product to breatfeed…it is not a huge issue but you have to be so very careful. Just a heads up…did they test him for bovine allergies as well…
Cathy
This has been such a scary time for your daughter and grandson! We all hate to see infants sick and in the hospital, but I thank God for dedication and intelligence of health professionals and for the plain simple fact that we have access to first world healthcare! God bless alll who serve others, be they brain surgeons or ditch-diggers!
Food allergies plague our family. And yes, they can be life threatening! While breastfeeding our oldest, I had to eliminate from my diet: all dairy, wheat, eggs, brassica veggies, corn and chocolate (this one really hurt!) for her. In addition, I am deathly allergic (throat swells shut-no breath no life) to all tree nuts, peanuts, carrots, avacado, bananas & kiwi. Additionally, I cannot breathe when exposed to latex, including latex gloves used to prepare food. I’ve had more trips to the ER than my folks or I could count. Thank God for epi-pens!
At 3 months, our firstborn decided she was too busy to want to nurse but could not tolerate (asthma, eczema with cracking, bleeding skin and tongue) any commercial formulas, including prescription-only ones they feed preemies. I brought back my milk supply by pumping every 2 hours so she could drink it from a sippy cup. I used a manual pump, not the battery operated that my daughters use today. As my milk came back in, I was able to stretch to 4 hours between pumping during the day and 6 hours at night. I did this for 9 months. At 1 year, I started diluting my milk with fresh goat milk. Started out 1 oz goat milk to 8 oz of mama milk, each week I increased the amount of goat by an ounce. She not only survived, she thrived on a breast milk only diet for her first year! She was born at the 95th percentile for height and length and maintained that growth curve until she could tolerate solid food. She grew up to be 5’8.5” tall, was an elite student athlete and worked her own way through her college education and degree.
Point is, women’s bodies are amazing! We can not only carry life within us, we can sustain our babies with breast milk for a year! It’s not easy. It meant I had to clean up the way I was eating and go back to fresh fruits and veggies and carefully selected grains along with farm grown beef, chicken and later rabbit and fats, yes, fats. I still cook from scratch and we eat very little pre-packaged foods. It is amazing what we can do for our babies!
If my own Mama hadn’t grown up with and continued the old fashioned way of fresh self-prepared foods, I would have been labeled ‘failure to thrive’ and probably wouldn’t have survived childhood.
I pray this will be the all that sweet Gannon has to go through! May he quickly return to health and thrive on the love from his family, friends and the wide network of those who send their love in thoughts and prayers across your readership!
Children and grandchildren give us the greatest joy in life! Conversely, we despair when we see them struggle. It is the hardest thing for a mother see, and that pain even when they are adults. Hang in there, Jo! I’m pulling for you!
Bless you young lady for all you have to endure right now. I pray all will be well soon and this all will be behind you. You are doing a great job with your family situation. Sleep when ever you get the chance and take care of you too.
Lots of love and encouragement in these comments! I believe Gannon NOT having that awful disease is an answer to prayer! I also think that a visit to a pediatric chiropractor (adjustments are very gentle) would be a great idea. I suggested this to my niece whose daughter cried almost non-stop and one adjustment later, she was much improved. Childbirth is not only hard for the mother, it is hard for the baby. I hope baby Gannon and Kramer will have a much better week and that things will get steadily better for all of you! Hope you can get some good rest, Jo…lots on your plate right now and more overwhelming when you are sleep deprived.
We are encouraged by the what if`s for Gannon. So many children facing similar challenges. Hope you had a restful sleep! Roger feeling better is super! I have experienced Carver “symptoms” with my son along with many of his cousins. Carver’s red cheeks were my first clue . . . wheat and dairy. The coughing goes along with the allergy/sensitivity. Croup was big time stuff. Second hand smoke was a huge trigger, too. The kids all cut those bouts of croup, coughing, conjunctivitis way down to out. I share this as a possible path to step toward in offering relief or a solution for these precious children.
More prayers, thoughts, and hugs. Gloria
I’m a long-time reader and love your family and your blog. I’m quiet but want you to know that my prayers are going out constantly for you, your husband, grandson, and all the extended family. You have a HUGE online support group holding you all up in prayer!
When my son was an infant we went through projectile vomitings after being fed a bottle. Then a friend told us to by instant Carnation milk and reconstitute it with water. It worked like a miracle. My son could not tolerate the fat in the milk. I hope this can be a solution for your son. It’s an inexpensive alternative. I hope this helps. Prayers for everyone attached to this email.
I think your idea of getting a second opinion is best. Keep good records on Gannon. Please know that so many are praying for you and your husband, your children and grandchildren. We love you for all you do. For me personally, it’s like you’re another part of my family. Take care and know that you are always in our thoughts and prayers.
Hope you’re getting some good sleep in.
I’m happy to hear that Gannon’s feeling better. A chiropractor can work miracles so I hope they try that. Our little granddaughter, at a few months old, started tilting her head to the side all the time & was very fussy when laid down. The chiropractor fixed that and soon the whole family just made a family appointment & had the chiropractor work on all of them. They claimed they never felt better and the kids were less fussy and slept so much better.
I’ve been following your blog, and feel very sorry for you all, having to go through so much. I sincerely hope Kramer will react well to the treatments he’s getting, And poor Gannon! I may be going against the grain here, but Kalissa, not being able to breastfeed is not the end of the world. There’s so much pressure put on mothers to breastfeed nowadays but my generation (1950s, ) was often brought up bottle fed on formula and have grown up just as well. My elder daughter was breastfed, my younger one only for four weeks before I had to change to formula/bottle, and with both I’ve bonded equally well and both have had a similarly healthy childhood. I think the difficult part is to find a milk substitute that Gannon will tolerate. Good wishes to you all.
I sincerely hope that it’s just a milk allergy. Both my boys had milk allergies and neither ever had issues like that. Poor Gannon! And you better get some sleep. You are the glue that’s holding your family all together and they really need you. I know, easier said than done. My heart and prayers go out to you and your family.
My heart goes out to Kalissa, and everything your family is going thru. Our daughter has 3 children, the first girl has no allergies; the next boy at about 6 months was diagnosted with multi allergies including all dairy, nutes, eggs and a couple more. She was breastfeeding and for a short time did give up dairy initally. Things cleared up a bit. She kept pushing to have him tested for allergies. A child that age can not be tested for allergies. Finally at about 6 months he went on Alimentum and things got better and then he was able to be tested for allergies. I could keep going on but you probably have heard alot of that already. But the third child also has issues with Eosinophilic esophagitis (EoE) he will be 2 in June.
I would recommend that you visit with other moms and fathers that have these issues. I can get you in contact with my daughter and she can give you lots of info to check out. Just let me know. Kind of a new worry is that she’s due in September with her 4 child. Good luck. Robert, in northern Iowa.
I would encourage your daughter to give up the dairy and soy…. and continue with the breastfeeding / pumping or how ever she does it. She might find she herself feels better without dairy and soy. My daughter has gone that route and things are better with her baby…. nothing like what Gannon has had to endure but still not tolerating mom’s milk well.
Dear Kramer Family,
I continue to pray for all of you as you face the hard time you are in. God has not left you to deal with this on your own. He is in the midst with you, and so are your many blog friends. Take heart, and hold on to Him.
Take care of yourselves as best you can. You are blessed to have such a strong family unit.
My son was a premmie, I got ill and was on medication for quite some time. He couldn’t suck, too early fir that reflex. By the time he could, I couldn’t , he was fine and now has 2 beautiful girls and we live together to raise them. I missed that opportunity but in the end it worked out. I hope all goes well for you.
Kalissa can keep breastfeeding. It is possible to get the dairy and soy out of her diet. Not easy, but if she wants to keep nursing Gannon she can do it. She is smart. Goodness knows the antibodies he gets from his momma are best. I hate to think of her being heartbroken and pushed to wean him. Gannon is HER baby. The doc should help her learn how to cope. Please, please hug them tight for me.
Hug Kramer too please. Both of you :)
You are thought of often and prayed for every time.
Still praying for all of of you. The diagnosis is great about the Hershsprungs disease. Not so great on the rest. I know goat’s milk is great for allergy to cow’s milk. Also if Alementium is the only formula he tolerates you can get help from Medicaid especially if Dr. writes a prescription for it. Keeping the little guy healthy is the whole point of everything we can do.