My Journal of my Journey through SAHMotherhood
I'm a stay at home mom to 2 wonderful boys! My son Ethan is 3yrs old, and my son Kaiden is 6 months, born August 19th, 2005. As any other stay at home mom knows, its a tough job!! And taking time to relax and write a blog entry and reflect on the day feels good!!
Friday, July 24, 2009
Well 6 months after the loss of our sweet baby we found out we were expecting again, exactly 6 months later. The pregnancy went smooth and wonderful besides my worry of losing another baby, it was the easiest pregnancy I have had. I bought a doppler and got to hear the heartbeat every day. We were having another BOY :D and we couldnt be happier. At 37 weeks my Momma passed away from a stroke, it was and still is very heartbreaking. I had talked to her for 4 hrs that day on the computer and on the phone. I had just bought her plane ticket, she was going to come visit in 1 week and be there for the birth. we were both soooo excited. She couldnt wait to see her kids and grandkids again. She was the happiest she had been in a very long time, esp since my brother tommy was going to be there the very next day. but none of us got to see her alive again, I guess there were other plans. We all have some of her ashes in mini urns. I will never understand why god chose to call her home at that time. It just feels so cruel to take her right before she was about to see all of us again! He took such a wonderful and happy moment away from all of us.
Corbin was born 2 weeks later at 39 weeks 5 days weighing 8lbs 9.5ozs and 20 3/4 inches long. He has 2 gaurdian angels watching over him and all of us. It was such a blessing to have him here alive and healthy finally!! Labor was 5 hours long and I think I pushed 2 times.
When corbin was 2 months old he started having diarrhea. I was trying to tell myself it was from his cold that he had at the time. But the cold went away and the diarrhea continued. I tried remaining optimistic but it didnt matter. The diarrhea was there to haunt me and not going away. Finally after almost 2 months I brought him in and they ordered some tests that came back normal. so I figured it wasnt Pancreatic Insufficiency like kaiden has, he just has a sensitive tummy and will outgrow it. But his tummy pains were getting worse. I was barely getting any sleep, up every 1/2 hour a lot of times. Good nights were every 2 hrs. At some point the diarrhea actually got better but then he had constipation and went 6 days without pooping. I was trying everything. Prunes, karo syrup, suppositories, etc... nada!! so I brought him in and they said to give him 1-3ozs of pedialyte twice a day and that should get him regular again. And it did! But the diarrhea came back. Stool studies kept coming back normal though, yet he was quickly dropping on the charts. He got down to 10th percentile, he use to be in the 95th!!! They did a blood test at 10 months to test to see if his body was releasing the digestive enzymes, and it showed that amylase was really low, but the others were really high. So it looked exactly like what Kaiden has. So they started him on enzymes like Kaiden, which was working great, but he wasnt taking them with breastfeeding. I tried EVERYTHING and it was so difficult. His poop did get solid, so we figured we were on the right track, but then it went back to diarrhea! Ugggghhhh!! I knew I had to quit breastfeeding because he wasn't taking his enzymes properly and he was still having tummy pain so he was breastfeeding ALL night. When he was almost 17 months we quit breastfeeding cold turkey and started the enzymes religiously. His poop was actually formed stools!! The best solid poop he has ever had and we were so excited we finally figured it out. But after about 3 weeks, even though nothing had changed, the diarrhea started again!! Sigh...... So we had no idea what to do. Kept bringing him in and being told to continue the enzymes. They raised the enzymes but nothing seemed to be working. He was still having diarrhea for weeks at a time and some solid poop inbetween. They recently did more stool studies which came back normal. Ugh! He is 20 months now and they started him on zantac. He may have to much stomache acid which eats away at the enzymes before they work. I pray this fixes it!!! oh when he was around 1 they did a ultrasound of his pancreas and an upper GI barium swallow, both came back normal. If nothing works our next step is probably the endoscopy, colonoscopy, and pancreatic function test....
On to other news, Kaiden just graduated preschool! he will be in kindergarden!!! Gosh time flies! He is ALMOST on the growth chart!! The enzymes have been working great for him. He was taking 3 but a few weeks ago he started having trouble with bowel movements. He would sit on the toilet just crying but only squeezing out little strands. It was so sad to see, He would sit there for 30 minutes to an hour and a half just crying. It went on for days, I did a suppository (gross I know but as a mom you do what you gotta do!), and it didnt do anything, he wanted another one! Which shows just how much this was hurting him. I called his pediatric GI dr. who told me to get some stool studies done, and to double his enzymes for 3 days. so instead of 3 with every meal, do 6 with every meal. So I started that and it worked! He did a HUGE bowel movement, it was really dark and quite compacted looking. I used it for the stool study. The stool study showed elevated fecal fat, which meant he wasnt digesting his food all the way, so now he is on 4 enzymes with every meal and he is doing great again!!
Ethan just finished 2nd grade! I cannot believe he is going to be in 3rd grade!! Where has the time gone?? He did wonderful in 2nd grade. He was the best reader in his class, he read so good he was above their testing. They only tested up to reading level 3.9. So he was doing 4th grade reading most likely. His teacher had to order special books for him because all of the books she had were to easy for him and bored him. He is healthy! He is only in the 3rd percentile, but not because he has something wrong like kaiden and corbin, its just how he is growing. but he is in the 50th percentile for height.
Neils is finishing up his first year as a TEACHER!! He teaches Emotionally Disturbed kids and he is loving it so far. He gets alot of praise by all his aide's and by his principle at how good he is doing and that he is the best teacher they have had in a LONG time. He just has a real knack for these kids. I am really proud of him. This year he is FINALLY done with chico state, Whoooot! I am so done with him going to school! lol. He has one year of BTSA left but BTSA is pretty easy so its all good.
I starting doing photography abut a year and a half ago. For my 26th birthday Neils bought me a Canon Rebel xs 10.3 mp digital SLR. I practiced and practiced and have really grown but still have alot of improvement to work on. I got a little studio that has been wonderful. I got it for a WONDERFUL price. I am taking my photography pretty slow though because being a SAHM to my 3 boys comes first. My photograpy comes 2nd. I only do photoshoots on the weekends, and prefer to only do one shoot a week.
Well I think that wraps it up for now. I hope to remain active here!!!
Sorry I neglected you for so long!
Wednesday, July 25, 2007
here is your present.
I hope it makes you happy.
This is such a blessed event.
I love the look on your face,
confusion, shock, excitement, pure joy!
Then a warm embrace.
Will our baby be a girl or a boy?
We are both so happy to be a family of five,
to have our love overlow to my womb once more.
We both feel so much more alive.
We are having one more baby to love and adore!!!
So many hopes and dreams for our little one.
Will you be my birthday baby?
A boy, Liam Christian or a girl, Kathryn Dawn?
or a Valentines baby maybe?
I can't wait to be big and glowing,
to feel you move inside my belly.
To see Daddy's face as he watches me grow,
he loves prego belly's and he loves you so.
Wow, my belly is already starting to pop,
it feels so good to see you starting to make your appearance more known.
I can't wait to feel you flip and flop.
My how much you have already grown!
Everyday my belly your Daddy would rub.
We love you so much, more than you will know.
You are our sweet little bub.
You make us both glow!
Its the day of our appointment!
We are so excited to see your sweet little face!
Another blessed event.
Another sweet embrace.
Our hearts are racing.
How fast will yours be?
160, 148, 119?
This day means the world to us.
There you are, your sweet little self!
We can see your arms and legs
and your sweet little face.
Where is your heartbeat, It must be there somewhere!
You are to perfect and mine for your heart not to beat.
I know you must be fine, I am in prayer!
You look so sweet!
So peaceful and small.
I say to my Dr. "hes alive isnt he?"
no answer, I'm trying not to bawl.
Your Daddy is there, holding my hand tight.
Both thinking positive that you are alright.
Dr. Park measures you, you measure to the day that I am.
That means you must be okay, you are our little ham!
Dr. Park turns to me, eyes saddened,
he says "there is no heartbeat"
I start bawling, this can't be! you are my baby, you are so sweet!
But you are no longer alive inside my womb.
Where I was suppose to keep you safe and warm.
away from harm.
Our world is turned over, our baby has died.
how can this be? you were meant to be!!!
We have cried and cried, for our baby lost.
Please come back to me!!!
I miss you so much, my baby you are
Forever ours, forever to love and mourn.
forever to cherish, forever to remember
those everyday moments.
With us for a short while,
but loved as much as humanly possible.
We can never express how much we love you
how much we miss you,
how much we think of you,
how much you are a part of everything we do.
Forever in our hearts,
we love you so much
Our very special forever baby!
Tuesday, July 24, 2007
Why did my baby have to be taken so early?
Why do others get to move on so fast?
Why do others get to live a normal every day life again when I cannot get my mind off of my baby??
I am so mad!!! Mad at whoever took my baby, and mad at those who already might be forgetting him!!!!
He was as real to me as my alive kids are, as my husband is, as my dad is, as my mom is.
I loved him as much as I love them!
I know others do not think of him as a live person, but to me he was. I know some ppl will think "oh you were early, it doesnt hurt as much as it would if you were farther along" thats crap!!! I wasnt sure if it was crap, but I have talked to another mom who has had a late loss (after 20 wks) and an early loss, and she validated that it hurts the same no matter what!!!
I know some people may get over a miscarriage easier, but I dont care.
I have lost a baby! WHY!!!!
I stopped everything the moment I found out I was pregnant! I found out at 4 wks 1 day and stopped coffee, soda, everything! I was so careful!! I loved my baby so much!!!
I rubbed my belly all the time, and sadly still catch myself doing so. i cry throughout the day all day. My head hurts all the time trying to hold back tears.
I cannot get him out of my mind, it hurts so bad! I had so many hopes and dreams for my little guy! I was being so positive that this pregnancy would be different, that I wouldnt have problems, that third times a charm. and then my baby dies. WHY!!!!
I am just so angry!!! Its so hard seeing everyone I love being able to go about their everyday life. But why should I expect differently? I shouldnt, but i do, and it hurts. and i hate ppl right now.
I want to yell and scream and say mean things to everyone.
They say everyone is there in the beginning, then the support and understanding goes away, and you are left feeling the loss just like you did the first day it happened. I feel like I already see that happening.
Gosh I am just feeling so angry right now.
my forever baby, I love you so much, i will never forget you!! You will always be my baby, whether I was able to hold you or not. You are as real to me as my alive kids. and you always will be.
Sunday, July 22, 2007
I had a dream last night. It started out before any of this happened. and we were going for our first u/s. I was so nervous. They got the u/s machine on and told us that our baby had died, there was no heartbeat, BUT there was another baby in there, with a nice strong heartbeat. although i was sad, i was so happy to still have a baby alive and growing inside, then i woke up and realized it was all a dream, and cried.
Friday, July 20, 2007
In it, it says:
"Thats me in the summer showers, Ill be dancing in the rain"
The night we found out our little guy had passed away we woke up to it pouring outside, really hard in the middle of a very hot summer. it rained almost all the next day too. we talked about how it was mimicing our feelings. The sky was crying for us. Then she posted that poem and we bawled, our baby was saying hi.
two days ago was the day my baby left my body.
We had to be at the hospital at 6:30, I didnt want to go, i wanted my baby to stay inside me, where he was cozy, not pulled out into this dark world, for them to put his body wherever they did.
We got at the hospital and spent 2 hrs in the waiting room! Grandma Grandpa and my sister showed up which really helped! It meant so much for them to be here for us and our baby! He was so loved and special! and will be missed so much!!
I got called back to our room where I had to undress and get the IV in and everything.
I hadnt ate all day, but didnt have an appetite.
We were in the room a few hours. Just relaxing and watching tv. Me and my hubby kept our hands on my belly, as close to our baby as possible. It was so sad. I spoke to him in silence, telliing him how much i loved him and wished he were alive, but that he would be forever in our hearts.
I did fine until the song came on the tv "Lean on me" then I started bawling and couldnt hold it in. I just kept saying I wanted to keep my baby, I wanted him alive, I wanted him to stay in me! I dont want him dead!!! I hate feeling this way. Then a few moments later the anasthesiologist came in and said "ready or not sweety, its time to go" i started bawling and said I didnt want to!!!! My hubby was able to come with me. We went to another room before going to the operation room. I was crying so hard!! me and neils just held tight to my belly and talked about our precious baby who meant the world to us!!!
Different dr's came in to ask questions before the operation. They said waiting was the worst part. Not for me, the longer I waited, the longer I got to keep my baby inside me!
Then they came to take me to preop and me and baby had to kiss Neils goodbye. It was so hard, i bawled all the way there, it was such a blur. They got me in the operating room, it looked so cold, and the last thing i remember was the anasthesiologist saying he was going to give me oxygen and he put a mask on my face.
Next thing I know I woke up in a different room and there was the anasthesiologist and a nurse talking, and no one else. Then i realized that it was all done and my precious little baby was no longer inside me. I instantly started crying inconsolably, hugging my belly, wanting him back so bad. The nurse kept coming and telling me to calm down and breathe. I felt like saying "SHUT THE FUCK UP!" I hated her!!!! but looking back I think it was because I wanted to hate someone, and she was there. At one point I was crying so hard my heartrate was so fast you could barely hear between beats. She came again and rubbed me and told me i really needed to calm down. I just hated her!! Finally they wheeled me to my room where my Hubby grabbed me and we held eachother and cried and cried and cried!!!! We miss our baby so so so so much!!!!! He was our baby! we loved him like our alive kids!!! I want him BACK!!!!
our family left and we wept alone. Then calmed down and I felt more at peace (for a little anyway) and we watched tv. I started feeling crampy and my birth canal was throbbing! it was so sad feeling that but having no baby to hold!!! I got a shot of demerol. I hate wearing a pad, I am suppose to be pregnant, not wearing a pad!!
We got home at 3AM. They said my D&C was the latest they have ever seen one done. I love my Dr. so much!! He took time away from his family because he knew how much it meant for me to have him be the one to give birth to my baby. And he is so empathetic and understanding.
Me and hubby slept in our bed, I kept hearing him wince in his sleep :( it was so sad! I woke myself up doing the same thing sometimes.
I woke up the next morning and just bawled on his chest, he cried with me.
I still have iodine all over my thighs, and I smell like birth. Except I have no baby to hold!!! And i dont want to take a shower and wash it all away. I know it might sound gross, but I dont want to wash away any part of him! I am still in the same clothes i wore to the hospital and still have my bracelets on.
GOSH I MISS HIM!!!!! I JUST WANT HIM BACK SO BAD!!!
Yesterday a close friend of mine brought over a pot of chrysanthemums and food, it was so sweet!! Today I had the overwhelming feeling of wanting to place them in a beautiful pot with a steak in it with an angel on top. A memorial for our baby. and next thing I know my friend is at the door with it! it was so sweet!!! me and hubby set it all up this evening, it was sad but felt good to do something for him. He deserves so much, our precious little baby!!! Our baby forever!!
we found out
I lost my baby
Im so heartbroken.
My pregnancy was going so good, I had bad morning sickness and no cramping or anything.
Yesterday at 830 in the morning me and my husband went to our appt! I was so excited to see my little baby. Everyone said CONGRATS in the office (they all know me from my last pregnancy). I was nervous, but excited.
He (I feel it was a boy) looked so perfect! I saw his head (neils said "he has your head") and body and cute little arms and legs. He looked so peaceful. I noticed right away that I couldnt see a heartbeat. But ive heard where its hard to pick up right away sometimes. So my dr. was moving the u/s around in different angles. I got to see all of my precious baby.
But I was getting so concerned that we couldnt find a heartbeat, and the baby wasnt moving. I finally said "hes alive right??" and my dr. didnt answer. Thats when I turned away! A few moments later my dr. looked at me very sad and said "there is no heartbeat" i can not explain the feeling I felt! I instantly started crying and my husband later said that my legs were trembling!! My dr. kept looking then stopped and left so we could have some peace. we just held eachother and cried. I couldnt believe it!!!
After we calmed down we went into his office. He was so sweet! My dr. handled it so well!! He explained how most of the time its genetic. I asked if i had a subchorionic hematoma (i had it in my last pregnancy and it can cause miscarriage) he said i did where the placenta is tearing away. He said that could have happened before, and caused the loss of the baby, or it could have happened after and is happening because my body is preparing to abort it. He thinks it happened after the baby passed away. He also said that he could see my uterus is starting to collapse. It was so hard.
We had to sign paperwork for him to refer us to the hospital for a second u/s to confirm whether or not the baby had passed away or not. It was so sad seeing "fetal demise" written on there. He also had to explain what would happen in the D&C, that parts hard to get out of my head. But i do not want to feel my body expelling my sweet baby and having to flush it down the toilet. So I had to sign paperwork then it was time to leave. There was a pregnant lady in the waiting room and it just made me cry more. i dont want to see any pregnant ppl right now!!!
We went and picked up our boys and had to tell our friends and some family about our sweet babys passing. It was so hard and felt like a nightmare that i desperately wanted to wake up from!!! At 1 we had to go to the hospital and register at preop for a d&c the next day. that was so hard having to answer so many questions. Then we had to go to the lab and get blood drawn, then with my full bladder we had to go to our next u/s to see once and for all if our baby had passed away. We had to wait for forever and I was getting so mad! I eventually got up and went to the bathroom anyway, then started drinking more to make up for it. Then the u/s dr. came and brought us back. i was so nervous my whole body was shaking and i couldnt stop it!! I kept thinking that i saw little glitches of the heartbeat, but it was in my head. she did a belly u/s and then a vaginal u/s and our little baby still looked perfect but no movement and no heartbeat. I was heartbroken all over again. We then left to go home!
It has been so hard! I love my baby with all my heart, just like i do my live babies. I rubbed my belly and talked to him all the time. The night befre the u/s I had some colostrum/milk leak and thought "YES!! you are ok" then the morning right before the u/s i had a little bloody nose and thought it was another sign that he was ok! But he wasnt. I lost my morning sickness symptoms on sunday, so am wondering if thats when he passed or not. I am not sure. I wish i knew when and why!
He is still in my belly, perfect as can be, but no longer alive. He looked so cozy. I have a picture of him. he is just perfect! Why did he have to die? I dont want him dead! I want him alive!! we already had so many dreams for him! his due date was justa little bit past my birthday and valentines day, he was going to be my bday or valentines day present!!! and he was his daddys fathers day present!! I found out on fathers day and gave my husband the test wrapped up for his fathers day present!! Im so heartbroken. I barely slept all last night knowing it was my last night I would have my baby inside me. Today is so hard knowing today is my last day with my baby inside me. and tonight when I go to the hospital and have to say goodbye, i dont know what i will do!! and to wake up and leave without him just hurts so bad to think about it. I WANT MY BABY ALIVE!!!!
I love you my precious baby, and I will never forget you! and I will not let you be forgotten!! you will always be my baby!!!
Friday, May 18, 2007
I feel soooooooo bad writing this. Obviously i would do ANYTHING for my kids, but cant help but feel overwhelmed. I hate that Kaiden needs this all the time, I hate that I have to torture him with it!! He use to be fine with it, but now he isnt and will try and eat around it! So i have to feed it to him. which isnt easy. if it was once or twice a day, thats fine, but its all day.
and when he gets sick, his body gets worst, so now I have to up his enzymes when he is sick.
My poor little guy. I feel so bad for feeling this way. I should be happy to do anything possible to make him feel better.
I just needed to get this out.
Thursday, March 08, 2007
Last time I wrote I had to quit breastfeeding to see if Kaiden was reacting to my breastmilk. After just a few days his poop started to solid up so i thought we finally found the answer to his Diahrea and FTT (Failure to thrive) however he did still have his tummy pains and even though his poop got more solid (it was mushy still, but not runny) he was still going like 5-10 times a day, but I wasnt worried. A month after I quit we went for his monthly weight check and he LOST WEIGHT!! I was completely flabbergasted, I thought for sure he would have GAINED weight!! So he was down to 18lbs 8ozs. and off the charts for his weight and age. So his Pediatrician contacted Dr. Cox at Lucille Packard Childrens Hospital and said that he needed to be seen asap. They called on a Friday, and let us know we had an appt that following Monday!!! Its a 4-6 hr drive from here, so on Sunday we went to the Grandparents house and stayed the night, then left monday for the appt. It was my first time ever being to a huge hospital like this! It was so scary for me, that my son had to be seen at a childrens hospital! I never ever saw that happening to any of my kids. It was really cool. Lots of bright colors, bright furniture, toys, large screen tv's, etc........
When we got called in their scale showed he lost more weight (although different scales can vary) anyway, Dr. Cox had a family emergency so we saw his assistant who took tons of information and had to keep leaving to talk to other specialists like nutritionists and such. She ordered another blood test, more stool samples, etc.... The stool samples came back that he wasnt digesting his Fats and Carbohydrates, hence the loosing weight/not gaining weight! So then they ordered a sweat test to test for cystic fibrosis. That was such a scary test because of the scary result it could be!!! It came out NEGATIVE!! WHEW!! Big sigh of relief.
After those tests an Upper GI small bowel follow through was scheduled. So in early january we had to go back down to Palo Alto for that. The whole thing took a long time, but wasnt that hard to go through. here are some pics:
The results of that came back normal.
In mid January we had an appt with Dr.Cox again, but this time in Chico. Unfortunately once again he was away so we had to meet with a different GI Dr. who was a complete JERK!!!! and basically acted like we were making something out of nothing! we left there pretty irritated!!!
On January 30th we had another appt in Palo Alto, this time for a colonoscopy, endoscopy, and pancreatic function test. I was sooooooooo nervous!!! He was going to be put under and have a breathing tube put in. We had to be there BRIGHT AND EARLY AT 6AM!!!
We were brought into a prep room where different ppl came in asking alot of questions. Putting hospital bracelets on him, a hospital gown. Gave him a pre-med which is suppose to make him a little sleepy so he doesnt get to scared before they do the anesthesia. Finally the Dr.'s came up with the hospital crib. We had to follow downstairs into the procedure room where they started hooking stuff up to him, and put the mask over his face to put him to sleep. we got to be there and it was soooooooooooo hard!! I was trying to be strong and hold back the tears but couldnt. He was tossing his head back and forth trying to get it away from his face, then his little eyes started rolling into the back of his head (this is where i really started crying) and he was asleep!!! Then I had to leave my precious little boy in the room with a bunch of strangers, I bawled like a baby in the waiting room! I didnt want him to go throught ANY of that EVER!!! and I didnt want to go through it either!! (oh, Big Brother Ethan was with Grandma Bonnie at her house) We went and got something to eat at the cafeteria then came back and waited some more, Neils got a little nap in, I couldnt relax enough to sleep! Dr. Cox came in and told us that it was done and he was being wheeled up to recovery and told us how the procedure went, it was so hard for me to sit and listen when all i wanted to do was be with my little boy!!!! Anyway, he had two sets of pictures. One set of his upper stomache where it showed some irritation in spots, and then a set of his lower stomache/bowel where there was ALOT of irritation and some bleeding. He said on a scale of 1-10, 10 being worse, it was a 10. They took biopsies from everywhere. It was going to be a few weeks before we got the results back from anything.
We finally got to go up and see our Baby boy! He was fast asleep still with everything hooked up to him! it was so sad. He looked peacefull though. They left the covers off his shoulders, so i immediately covered him up, made me feel like i could do something to help him as his mommy.
He slowly started stirring awake, I got freaked out at one point because his neck was pulsing REALLY fast and I thought it was because he couldnt breathe, lol, it was his heartbeat silly me! LOL. Anyway, he woke up and was very uncomfy and crying, I picked him up and tried consoling him but it wouldnt work :( He kept trying to pull his IV out, he HATED it! and his tummy was hurting him. He let out a few HUGE farts. a few minutes later i noticed my hand was wet and wasnt sure why. Well, it wasnt a HUGE fart after all, it was water diahrea. So i put him down and changed his diaper, where he had about a teaspoon of blood, which i was told could happen. Then he fell fast asleep on me. So we sat there waiting for the hour to pass to make sure he wasnt going to have any reaction. Then they took everything off of him and we could leave, but not leave the town for another hour because of him bleeding, they wanted to make sure he didnt bleed any more. He didnt bleed anymore so off to Grandmas we went. I was SOOOOOOOOOOOO glad to be out of there!!! We picked up Ethan and headed home. Kaiden was pretty drowsy and slept pretty much all day which made the trip much easier.
here are some pics from the experience:
It was so hard waiting for the results! about a week later we got the results back from his biopsies and everything was normal, no allergies, SO HE GETS TO EAT DAIRY PRODUCTS NOW!!! YAY! So now we were waiting on the Pancreatic Function Test results.
Those took THREE WEEKS!!! and it showed that his Pancreas wasnt releasing the Amylase Enzyme needed to digest food! Which is why fats and carbs were going right through him. The other enzymes were on the low side of normal. So now he has to have Pancrease put into everything he eats! its been tough but we are learning and adjusting to this new routine. A friend called and told me that usually with Pancreatic Insufficiency its because of Cystic Fibrosis and that her son has it. I told her that the sweat test was negative, and she said so was her sons (his number was 33, 40-60 is borderline, over 60 is positive) so she told me to call the Dr. and ask what his sweat test number was. It was a 44!!!! When I called and they said the number, it was like my mind went into instant denial. I got off the phone thinking "whew, big negative" then it immediately kicked in it was borderline!!! So i called Dr. Cox and told him I would like the genetic test done. He agreed. So once again, another blood draw. This was the HARDEST wait of them all. I was so tore up that it was such a possibility. I cried every day and was just SCARED TO DEATH!!! anyway, the results came back NEGATIVE!!!! But, they only tested 32 out of over 1500 mutations!! So now I need to call Dr. Cox back and let him know we would like ALL genes tested!!
This has been such a hard road!!! Its so frustrating and so hard. I have my good positive days, and my sad depressing days. At first I was happy to have the answer about his pancreas. But when I picked up the meds for it, I cried, it hit me that my sons pancreas doesnt work like it should! like everyone elses. I cant really explain it, but i get a little sad everytime I open one of those capsules. I know its silly, but its the truth. Yesterday at dinner Ethan asked why Kaiden always has to have medicine in all his food, and we said its because his tummy doesnt work like its suppose to. and he asked if his did, and we told him yes, so then he asked why Kaidens tummy doesnt. Neils explained it like a car that runs and a car that doesnt. I dont know if Ethan understands, but Neils explained it pretty well. It made me sad that we had to explain something like that. I still feel like im in denial that my son has an organ that doesnt work right. I just never thought of anything like this happening. I thought for sure it was a food allergy.
BUT i am very very thankful that there is a medicine I can give him to help him. and that we do have an answer even if it brings even more questions to be answered! LOL. Its so rare that you cant really find any info on it, cant find anyone else in the same boat that DOESNT have Cystic Fibrosis. The Dr. cant really say alot, there are so much variables. we basically have to wait and see if he outgrows it. Anyway, I know I might sound dramatic, but its how i feel, and thats why my blog is here :) for me to get it all out! even if it is irrational.
When he gets all his enzymes he only poops once or twice a day! he is 18 months and weight 19lbs 10ozs, still off the charts, but hopefully with the enzyme he will put some weight on fast! He has only been on it almost 2 wks and just got over the flu.
I think thats pretty much it for now.