I'm having a blogging slump lately, but hope to be in a more bloggy mood here sometime soon. I guess it's just hard to have a lot to talk about when I pretty much stay in the house almost all the time and do the same thing the same way every single day. I can't really blog about where we go and what we do, because we don't really go and do anything... especially not during the week.
So...
Jonah has been really fussy the last couple days. I figure it's probably teething, but with all his normal issues and all the fussing on top, it's a little tough. And he is not eating well at all. We've had a couple 14-16 oz days these last couple days, and he won't even touch solids anymore (he now gags when I give him apples or carrots... his two former favorites). I know that may be typical with teething, but it's a really big deal when he doesn't eat. Even a few days with so few calories can be detrimental to his healing and growing. He requires so much to be able to heal and regenerate skin. I can't begin to tell you how crazy it makes me that EVERY bottle is a struggle, and that sometimes I can't get him to eat at all. Yesterday he didn't eat from 12:45 pm to 8:15 pm. He then ate four ounces and proceeded to throw it ALL up. Then we could only get him to eat two more ounces after that. Today he's eaten a tiny bit better, but is screaming full force right now while Matt tries to give him his last bottle of the evening. Drivin' me nuts, I tell ya... NUTS.
Even though it was Matt's night last night, I slept horribly. I kept dreaming that Jonah's skin was blistering or peeling off and kept bolting upright in bed thinking I heard him crying, but not through the monitor. It was on. He wasn't crying. I don't know what my problem was. That's why I'm in such a foul mood tonight I guess... exhausted, knowing that it's my night to be up with him. And then getting up tomorrow and doing it all again...
Dr. Heather came today, and I have nothing but good things to say about all that, so I'm going to save it for tomorrow, because right now I just feel like being pissy, and I don't want to taint the good that it was with my crappy mood.
Maybe reading all that Sam is going through and having all of our own struggles with Jonah... it all just makes me so mad. I hate EB. I hate that it exists. I hate that it affects innocent kids who haven't even had a chance to live ANY pain-free years. I hate that they have to live covered in bandages. I hate that they can't play sports or struggle to ride their bikes, go swimming, or even wear a pair of regular underwear. I hate that they deal with having an odor because of drainage they can't control. I hate that so many have to fight to convince insurance companies to cover medical expenses, bandaging supplies, and genetic testing. I hate having to explain what it is. I hate that nobody knows about it. I hate that people stare in public. I hate knowing that if we have to go to the hospital, I have to be the nurse and the doctor. I hate that nobody except another EB parent really knows how I feel. I hate that I have to be part of this club. And I hate that, for now, the only possibility of a "cure" is taking your child within an inch of death and watching them endure unbearable suffering before it gets any better... if it gets any better.
I HATE THIS.
61 comments:
Praying for you tonight Patrice. Sending a big hug down to you from Ohio!!!
I haven't commented for a while but read and pray every day!!!! U have the right to have "pissy" days!! Praying God wraps his loving arms around you and gives you the strength and understanding you need to get over this "hump" (for lack of better word-sorry) No one can begin to imagine what u are going through, but I have so much compassion for your situation. I wish I could take Jonahs pain away for you and I don't even "know" the cutie so to speak, but feel so much Christian love for him and your whole family. God bless u all!!!!Michelle in Va
Patrice, you are in our prayers...I pray for your family and now for Sam and her family, that someday, somehow we find a cure, a less painful cure, for this horrid disease. I have a child with autism, and it's hard to hear "no cure". We have our struggles with his issues, but it doesn't even compare with the challenges that Jonah faces in his life. It's okay to feel mad; just know that we are lifting you and Jonah up in prayer for healing, for peace, and for comfort. {{{hugs}}}
I hate it too. Praying for you Patrice. You embrace those emotions because something good will come from this low time. Jennifer in Southeast, NC
I hate it too. Praying in Missouri!
Praying hard for you today! Please know that. Jonah is lucky to have you as a mom.
PS. Dr. Heather is a wonderful person!
You have every right to feel pissy! I wish that I would know what to say to make things better for you. Enjoy the little Jonut! I am sure that he loves his parents more than anything!
Praying for you tonight Patrice.
I'm also praying for you tonight! I hate that EB exists too! I'm not surprised that you feel like this! I would too! God Bless you!
I'm so sorry, Patrice. Praying for you because it's all I know to do.
I hate that your family has been through so much. I hate that Jonah hurts and then you and Matt hurt right along with him. I hate that EB exists at all. I love that you are honest about crappy days. I love that tons of prayers are bombarding our Lord and Savior on your families behalf tonight. I love that Jesus promises to walk every step of the way with you and carry you when you need it. I'm pretty sure that that His soft, tender arms have carried Jonah his whole life.
Many prayers for you and Jonah,
Terah
Hi Patrice,
Jonah's illness totally sucks. It's frustrating and devastating and you're under a lot of pressure. Release it any safe way you can!
My question is this: is there ANY way that your family can get a form of respite (spelling?) care - that a specially trained nurse can come and take over a few nights a week so both of you can sleep more? Would your insurance cover it? If not how about a fundraising drive to help you out?
Every young family goes through that 'survival mode' period when an infant comes home, but with the EB your survival mode hasn't stopped.
That's my awkward way of saying that I hear what you're saying and that maybe we can do something that's more tangible? I have no doubt that the prayers are keeping Jonah alive, but now something a little more needs to be done to give you guys some more relief.
I'll keep praying for you all - for Jonah's life, and for your family to get a bigger dose of joy. You guys are doing an awesome job. If every kid had parents as loving and dedicated as you two the world really wouldn't have any problems. I wish I were capable of a more elegant post right now, but I hope it made sense anyway.
Sarah, PA
I don't really comment much, but praying for you and hoping that this EB research finds a cure. I completely feel you. I HATE it too. Your so strong. I admire you so much. I can't even imagine or explain how I feel about you and your family. We love Baby Jonah!
Haley in Alabama
Praying and asking God to give you a peace that passeth all understanding. Praying that Jonah will eat good again and feel better. Praying for a cure for EB.
FROGing
Ooooh, I forgot I had another question (because upset people just love questions - sorry! I don't mean to increase your burden, so ignore me if you want!) does the nutritionist have any tricks up his/her sleeve for the calorie intake issue? You would think with technology these days they'd have a liquid form of cheesecake and Snickers bars to help a kid gain weight.
Seriously, ignore the questions if they are dumb/waste your time/you just want to ignore them. I won't be offended - and I hope my ignorance doesn't burden you!
Sarah, Pa
Frankly, it just. isn't. fair. Not even for a minute. You did nothing to deserve this and Jonah certainly should not have to endure this. It is heartbreaking, yet Jonah has stolen so many people's hearts.
I wish there was something we could do to ease your pain. We are praying so hard for you and for Jonah, and I am sure I speak for many prayer warriors that we wish we could bear even one ounce of your burden.
You ARE so strong and so loving and so sincere. You are so admired and we marvel at how you cope. Thank you for posting your hardships so openly. I can only imagine the number of parents with a child of EB or a similar condition who read your blogs and feel hope and relief in knowing that others like yourself are on a similar journey and surviving!
you have every right to feel the way you do...it must be hard to see your baby in pain every day!!! i will continue to pray for you and your family and your little jonut!
I hate that you have to go through this. Hugs.
I just got finished writing my pissy post and came and saw yours. Some days just suck. And it really sucks when there are more of those than there should be.
I'm still totally willing to make a day visit, but be warned, Quinn isn't the same kid you remember. Unless something changes, there will be a lot of screaming involved. Still want a visit?
I hear and feel every word of your post tonight - I feel every word deep in my bones. I think I have been saying "I hate EB" and "EB sucks" since I could talk. There is no way to sugar coat it - EB SUCKS!
I despise the fact that the only "hope" for treatment or cure is so completely dangerous and life threatening - as if our lives haven't been threatened enough!!
Please just know that there are other treatments on the horizon - hopefully they will work and hopefully they won't be so scary!
I really wish there was some way that I could help you. Just know that I am here and I hear ya!
Please feel free to call me at any time - I haven't been there as a parent, but I have been there as a PATIENT - I have been the doctor and I have been the nurse and I have been the educator and its EXHAUSTING!!
Please email me or call me if you need anything!!
I know what you mean about the eating frustrations, my girl was teething and didn't eat solids for over 2 weeks...she JUST starting eating them again (not much but at least she is opening her mouth again), I understand being driven nuts by them not eating. Hang in there, I am praying for you.
I hear you Patrice! You're right! EB sucks! It's not fair! Your anger is appropriately placed! I myself hate any disease that robs a child like Jonah has been robbed. You are frustrated! I am praying for you that you can feel the arms of Jesus around you as you endure this with your son! I do not know you, but I have grown to love you.
Hi Patrice-
There are times when encouraging words are good to hear, and times when you just want to say "SHUT UP!" I feel like this may be one of those times for you, so know that I'm ALWAYS here to encourage you, but for now I will just say that I HATE IT, TOO.
I hate it. And I'm praying. For strength and rest for you and Matt, and healing for baby Jonut.
Love from TX,
Laura
Prayers from Dallas, Texas.
I'm not even sure how found your blog but it has been so moving and eye opening to me! My 2 year old son has mitochondrial disease. Like EB it is genetic and rare. Mito has no cure or treatment.
I've found comfort in knowing that I'm not alone when I have down days. I've found laughter in the simple things like your family has. I've found faith when someone has given you a blessing.
Our journeys are different but alike. Thank you for sharing so honestly. You have given me the strength to be honest in my own blog.
I so sorry. Prayers for a better tomorrow.
I am so sorry you are going through this. Remember I am praying for you. God bless.
Dear Patrice, I haven't commented before but really felt that you needed encouragement tonight. I am praying for the Mr. & Jonah. I can't tell you how much my kids & I enjoy looking at Jonah's photos and oohing and ahhing over how precious he is. Our lives have been touched by EB and we have seen how this terrible disease can strain and agonize a family. But we have also seen the beauty of EB, in hearts that were softened and lives that were changed, hope where none seemed possible, and it all began with one tiny boy that suffered so much but was never held back by the chains that bound him. I pray that for Jonah every day. AGAPE
Patrice, I continue to love your honesty. You are such a real person. Remember, it's okay to cry out to the Lord- the Psalms are full of these prayers. Give it all up to the Lord, lay them at the foot of the cross. He is there with open arms to carry your family through these times. Prayers from CA.
I pray that YOU AND JONAH have a good night's rest.
prayers always,
2shoes
I am sorry too. I am sorry that this is your life, but so glad that you are sharing it with all of us. Because of your family, I know what EB is. I am sorry that you are living this, but know that you are more blessed then many of us. Any child that has been born special, only gives us more blessing. My brother has CP. I understand the heartache and joy that it brings. I know that it is not the same as what you are going through and I would NEVER say that I understand exactly what you are going through. Please know that I am praying for you.
Melissa Stirm
I had a lovely dream the other night about you and Jonah. His face was clear of blisters. I remember being really excited. It was a happy dream. Keeping you all in our prayers.
Hoping this suggestion may help some! Both my boys were BAD GERD(reflux) babies and I found after nursing for 6 months and then switching to formula that it only seemed to get MUCH worse. I tried LOTS of formulas hoping that one would stick better than the others and after just about every kind I found one. Its by Good start, called Natural Cultures and its a little pricey..but WELL worth it. Its supposed to be the one with the most immune system BOOSTERS in it and for some reason unknown to me.....it was the only formulas their reflux seemed half way tolerable with! Thought it was worth telling you! You can find it at any store(Yes Target :-) ) Green Can(or it used to be) good luck!
P.s-we tried SO many formulas, soy, gentle ease, you name it...and even the formula for "babies who SPIT up" made my babies SPIT Up more!
I feel so sad for you and Jonah. He is a lovely little boy and you are an amazing mother but I can see how hard this is. I wish EB was a person 'cos I'd kick that person's butt so hard.
I'm sorry to hear you are having a down day. I wish I could wrap my arms around you for support. It breaks my heart too that such a sweet boy has to endure this and that a future without EB is so uncertain. I continue to pray for you all and please know that we love reading about you, Matt and adorable Jonut. It helps to keep my prayers focused and seeing his photos truly make my day. You matter to many of us out here in blogland and we're here for support and to cheer you on. Hang in there and here's hoping and praying you both have a better day today. Love, hugs and prayers flooding down to you from Michigan!
You just be MAD, it is OK. I loved my time with you and Jonah today, thanks for the blessing of allowing me to help you out.
I love ya.
Praying fo a healing
Love Gina
I just wanted to let you know I am thinking about you. Don't worry if the slump lasts more than a day. There is a grieving process and it is totally normal. It stinks! It is completely unfair to all involved!
The thing that gets me through days like that (and they are MUCH more infrequent than they were that first year)is that I wouldn't trade Ethan for anything... even if it meant having another "healthy" child. I imagine people with EB are much like people with ich, some of the most amazing human beings I have ever met! In dealing with it all they become stronger. In many ways, little Ethan is my hero--how he takes it all in stride and is such a happy child! Look to Jonah and God to pull you out of your funk:) You have my phone number if you ever need to talk:)
On an unrelated note, I thought I'd ask your opinion on a couple books since DH & I have started back to Sunday school. (can you believe I feel comfortable enough to leave Ethan at Sunday school??? I am so excited about that!) I have ordered a new Bible, the NIV Quest Study Bible. Do you have any experience with it? I also thought you might have advice on looking for passages that explain a bit how terrible things can happen to a brand new baby... to parents that are good people. I am still struggling with that...
Have you asked your doctor about getting some Viscous Lidocaine for Jonah's mouth? It is a local anesthetic, used to treat the pain of a sore or irritated mouth. Normally you swish it in your mouth and spit it out, so I am not sure if/how it would work for a baby, but it might be worth asking about. Maybe it could just be used at those times that he is really not eating...still praying for all of you.
Jennifer E.
I have nothing helpful nor insightful to say except that I'm sorry. You have every right to hate this and to be mad about it. I'm so, so sorry.
I can not imagine what you are going through, but you have every right to be angry and frustrated. We have srtuggled with insurance issues several times for minor things and it is such a headache. As for the suffering babies go through, it is horrible. As a Mommy, teething and fevers would break my heart. I just think of you and Matt and pray for you to have strength every day. God works miracles and Jonah and EB babies certainly need one. No baby should have to hurt! Prayers for all of you each and every day.
praying for you still. I know these days seem to drag on and that you are living in constant replay mode (probably more so in your case than most), but someday soon you will look back at this sweet baby stage and say (just like all of us do) WOW this went fast!! God bless you.
I just wanted to say thank you for being so completely human and open with us. I cannot even imagine what a single day must be like in your shoes but I do know that if there is anyone who has the right to have pissy days its you.
Just know your prayer army is out there and still praying!
All i want to say is that you are a great mom and matt is a great dad!!! Many hugs for you and lots of kisses for jonah!!! Remember that some days are better than others. Tomorrow is a whole other day and it can be better!!
I don't even know you and I hate it for you, for Jonah, and for all other EB patients and parents out there. What a cruel disease. I think you are doing such a great job and am very inspired by you, however little that might help you right now. :( I will say a prayer for you all today.
And I am HATING it with you Patrice. There are no words.
I copied this note out of my life application bible several months ago. I just shared it with Lindsay (Ayden's mom) last week. It brings me great comfort when friends say "I'm just gonna sit here with you a little while." Not talk. Just sit and share pain. So, let me just sit with you. I love you.
Job 2:13
13 Then they sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was.
..............Why did the friends arrived and just sit QUIETLY? According to Jewish tradition people who come to comfort someone in morning should not speak until the mourner speaks. Often the best response to another's SUFFERING IS SILENCE . Job's friends realized that his pain was too DEEP to be healed with mere words so they said nothing (if only that he continued to sit quietly!) Often we feel we must say something spiritual and insightful to a hurting friend. perhaps what he or she needs most is just our presence showing we care. pat answers and trite quotation say much less than sympathetic silence and loving companionship.......
I just want you to know that you aren't alone. Every parent worries, jumps up at night in terror, worries more, has really bad days and feels bad for circumstances. Yours happens to be EB. Mine is essential tremors in a child. My child's isn't as obvious as yours, but the worries are the same. I can assure you that each parent can relate to your feelings and fears even if they don't have an EB child. Talk to your friends! You'd be amazed at how each one has their own list of issues. They may be on a different level, but to a parent they are none the less worrisome. Take care of yourself. Take him to Target even if he is screaming! Maybe he is just needing a Target fix just like you and a change of scenery would be in order for both of you. P.S..more spanish lessons, please. :) I really enjoy being able to throw a few words at my daughter who took Spanish 1. haha Hugs to you...
Dear Patrice,
I am praying for you to be comforted and to feel the love of God's arms around you and your family. And agreeing with you for Jonah's complete and total healing from the top of his little head to the soles of his sweet feet - miracles still happen today! Thank you for letting us know when you need extra prayer - even though we've never met - there's no distance in the spirit realm and you have sisters in the Lord who will uphold you.
"Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." Isaiah 41:10 (New Living Translation)
Melissa in TN
I continuously pray for a cure. My mom has psoriasis from head to toe. She gets lesions on her hands and feet and gets spots in her mouth. Although it it nothing compared to EB, I can similarly understand the frustrations of a debilitating skin disease. My family is prays for a cure for my mom as well as for my dad who has hep. c.
It is so hard to see a loved one suffer. I pray for Jonah and everyone else who is so patiently (or in many cases impatiently) awaits a cure.
May God bring peace to you and Matt as the caregivers to Jonah!
I hate that you, Matt and especially Johah have to go through and endure this horrible disease. I hate that you sometimes feel so abandoned and alone; scared and mad. I hate that you have to live a life (for now) of isolation and loneliness. -- I love and admire your faith. I love and admire your strength and courage. I love and admire that you DO put one foot in front of the other, especially when you don't feel like it. I love and admire the tenderness and caring you have for Jonah. -- We are continuing to storm heaven with prayers for all of you. Pat, Batavia, IL
When God leads you to it, He will lead you through it. Trust and rest in the love of the Lord.
Praying for you. Thank the good LORD that you not only have this blog as an outlet for your feelings but because of the internet, you have "friends" who know what you are going through first hand and /or are here to listen and pray for you.
God Bless you and your beautiful family Patrice.
Crying for you... Praying for you...
I am so sorry for what you are having to endure. I hate it FOR you. And I pray for a cure, and in the meantime, for peace and joy in your life with your precious boy.
You have every right to hate it! I hate it for you. Sending prayers your way!
I have read your blog for several months. I have never left a comment, but I am a speech therapist who treats patients with feeding difficulties. Some of my babies are given MCT oil which adds a few extra calories without extra volume. There is also a product called Benecalorie that some of the pediatricians are comfortable giving to infants. It can be found online and it provides almost 350 calories per 1.5 oz. It is a liquid product. I also have tried Duocal, which is a powdered calorie additive. I have never treated an EB patient, but I wondered if on those difficult feeding days Jonah could have the extra calories without taking the volume of his full feedings. Lots of continued prayers. Reagan in TX
Patrice,
It's Courtney Roth, you emailed me a few weeks ago. I am so sorry. I know EXACTLY what you are going through.... the struggling with eating, the HATING everything, and the horribly BAD days. Please call me if you feel like talking. I would love to talk with you.
(985) 969-6942. I understand if you aren't in the mood, as sometimes that is the case. Call when you are ready. ANYTIME of the day or night!
Love, Courtney
My child also has a genetic disorder and there are days I have to literally scream because no one has heard of his disorder (most doctors don't even know much about it) and people assume so much about him because of it. I hate, hate, hate it and having the future being a big question mark makes me hate it even more. You are entitled to a bad day once in awhile.
I'm right there with ya :(
Some days are like that.
Dana Z.
I am so glad that you share during your pissy days, because it helps me understand better the things that you want people to understand! Obviously I don't really UNDERSTAND, but I get to see a picture of your trials. I pray for you and Jonah daily! I'm thankful that you can share even on the bad days! The more you share, the more people will know about EB!
Sending many prayers.....
Praying for you guys!!!
We do not deal with EB...but other issues but nothing painful...it just breaks my heart to hear how much pain he must be in. We had lot of feeding issues. I'm going to throw this out...but I'm assuming it already has but you never know. Have they tried carafate with him...to coat his throat...won't stop the vomitting (for us reglan has worked wonders...but there are risks with it) but it could really help the bottle refusal.
Please know we keep your family in our prayers.
Sarah
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