happy bouncing Dah!!

Dylan chillin in his buddy Preston's swing!! He looked so happy we went out and bought him his own... but Lincoln won't stay out of it.

too much thinking not enough fun...

I am thinking about tackling the playroom soon with something crazy... Huge chalk board trees painted directly on the wall... or.... i don't know but something bold and fun. you only live once right?

WE GOT IT!

Finally got a GI referral for Dylan. I have been hoping and pushing for this for about a month now. I called Dr 2 and told her that since our visit 6 days ago I am still seeing specks of blood in Dylan's stool and she said that she would send out to a referral to GI. She thinks it will be approved in about 2 weeks time. I am very lucky that we are able to have this insurance but I feel like half the time my hands are tied and all that I can do it wait unless I have cash to get these tests done. I am lucky that he is thriving, he is eating well and in the 90th percentile or I would be freaking out even more. I have given up dairy completely and I am frustrated because it isn't working as fast as it I want it to. I am reading that it takes approx 2 weeks to leave your system and another 2 weeks or so before it exits the babies system. I ate In n Out about 2 weeks ago not realizing that even the smallest ammount of dairy can cause Dylan's system to go right back to square one and the healing process would have to start all over again. So it's been 4 weeks... but I can only count 2 of them as dairy free. So in 2 weeks if he is not showing progress than 1.) I am going to be upset and 2.) I will have to eliminate other possible allergens from my diet.

Lincoln is doing really well just being off of dairy. He is still sleeping amazing. He has been sleeping well this entire month though he does wake up occasionally for some rice milk at about 5am or so. I will take that any day over the horrible nights that we used to deal with. I still wonder what else if anything that his system may not tolerate so well. His lymph nodes for the first time since he was a year old have gone from the size of a grape to more of a small marble. I would say that even though it is still there and visible it is half the size and a lot of the other small ones have either dissapeared or shrunk.

Nolan is doing well and hit his first OVER THE FENCE HOMERUN OF A KID PITCHER!!!! I was so upset that I missed it. First game that I decided to take the tired babies home since we had just sat through one of the games Taylor had coached. The day prior we went to Taylor's game and a softball game. I was baseballed out and didn't really feel like wrangling the babies for a 4th game in a 48 hour period. I cried and cried and cried when I heard what he did. I was so proud of him and so mad that I missed it. I could have sat through one more game. I really wish baseball didn't feel like such a chore to me. I just don't think I will ever enjoy it. Too bad for me that if I want to share those moments that Nolan and Taylor are so proud of... I can't miss the games. Nolan was so sweet and offered to give me the ball so I wouldn't be sad. He is such a good kid. :)

Yuck... link needs a diaper change and dylan is hungry!!! Later!! :D

saw dr #2 today

Took Dylan in first thing this morning for the blood in his stool. I was secretly hoping the Dr didn't remember me since last time she pretty much told me I was derpriving my kids of the benefits of milk. I tried to get my insurance's approval to see a new dr. they said no. Today there was no way she could tell me that what was happening to dylan was normal. He has blood in his stool and if she told me again that I was wrong I was going to have a break down in her office. She said the blood was probably from a rash on his bottom and when she checked he clearly does not have a rash. She said he would probably be just fine and sometimes mom's may eat something that upsets the babies system. Then I told her that I brought the diapers for her to look at and when her gloved hangs unfolded the frozen little gifts i brought her she looked at me a little differently. She said "this babies diaper is full of mucus." (that's what i said about 10 times) then she asked how long and I told her AGAIN that it's been almost a month. She looked at the bloody diaper and she said "i need you to cut out all dairy for 3 weeks and call me to tell me how he is doing. This looks like we have a child who is allergic to milk protiens." do you have any idea how badly i wanted to say "DUH!!! I've been trying to tell you guys that!!! Now help me make my baby better!!" But then she said "We will have to wait and see at 6 months to be sure we can't allergy test him before that." and i don't have 6 months to wait around lady. Especially for an allergy test that isn't 100% accurate. So no dairy. That's what we are doing and have been doing. I didn't want to tell her that becuase I realized she is like a man and this needed to be her idea not mine... and I already have one of those I call him my husband. So... I will take this information and move on to the next pediatrician and pray she thinks like a mom... not a man.

sick to my stomach over poop but not in the way you would think...

i knew parenting would be stressful and demanding but never did i think i would actually cry over a poop diaper. dylan's diapers just keep getting worse. tonight as i was changing him i noticed blood in his stool. i dug out a diaper that my color blind huband changed and sure enough it is full of mucus that is bright red. i knew this was coming because in the week and a half that i have not had dairy he hasn't shown too much of an imrovement. i think maybe soy is bothering him too. i spent the morning calling GI's and tryin to see if any in our area are covered by our insurance with a referral. I was able to change pediatricians and that won't take effect until 4-1 and that is 2 1/2 weeks away. this may be able to wait until first thing in the morning but i will not wait until april... no way. i am going to call in the morning since the last dr i changed to seriously blew me off and made me feel like i was crazy for analyzing my kid's stool... i knew it didn't look normal. how bad must his little system be off to actually bleed? If they don't change his dr due to an "emergency" than i guess i work up the courage to walk back into the old peds office and try not to tell her that she is an idiot. PLEASE let them realize that my babies need to see a specialist. This is the same thing i went through with lincoln minus the bleeding. i don't know what else to do. i know something that i am eating is bothering them... and i will figure it out. hoping for a GI appt that gets approved stat. ill let you know how tomorrow goes.

i am going to be a zombie if i don't get some sleep

all that i can think of is food allergies. it is running either in the front or back of my mind and if for a second i forget... lincoln turns his head and i remember. i would do anything to have that swollen lymph node go away. he has been dairy free for 2 weeks. the first week he was on rice milk, juice, fruits, veggies, meat, rice and a few dairy free snacks and doing well. he had lots of healthy options to eat and was actually eating more than normal. his lymph node was finally shrinking a bit. then wic changed our vouchers to soy and its been about a week on soy and the lymph node seems to be swelling a bit again. going back to rice milk. i am finding out that half of the kids with a milk sensitivity also have a soy intollerance of some sort. crossing my fingers this isn't the case... soy is in everything. this is frustrating and i wish i just knew what foods to avoid this guessing game wouldn't be so frustrating. went to farmer's market this am. got a lot of veggies to try. even got linky and nolan to drink carrot juice mixed with oj. that's huge since if either of them could choose they would reach for soda. i have a feeling this is going to be a long process but we are finally on the right track since eliminating milk has for the first time in lincoln's life has allowed him to sleep peacefully. crazy to take dairy away but if you could see what it has done for this kid you would wonder why anyone drinks it. i am really starting to think cow milk was made for baby cows and not humans... what a concept. it's almost 1am and i have been researching GI specialist in the area. there are 4 in murrieta and 3 of them work in the same building. i am going to call tomorrow and see if i can get someone on the phone to see us. i am exhausted and my brain is on allergy overload. i can easily read and google about this subject for hours and hours... whatever it takes... i am on my own little mission. dylan's diapers are back to being discusting and not normal. he is gaining well but so did lincoln. i don't know what is going on with this poor guys system but it's very obvious that like lincoln when he was a baby something i am eating is upsetting his little body pretty badly.

milk protein allergy and things that seriously irritate me.

it frustrates me off that a pediatrician can't help me solve the problem with lincoln's lymph nodes/immune system. i have seen 2 pediatricians that have been sure to let me know that she was the expert and that I had nothing to worry about.. his symtoms are all "normal". What makes me even more mad is that because she is a doctor and therefore smarter than me... I listened to them for a year with a horrible feeling in the pit of my stomach that this wasn't normal even if his blood work said so. In all my research i am realizing that drs/peds are not even trained in food allergies... they go to school to treat and medicate symptoms. not necessarily find out the cause. Well that would have been too easy and save a few thousand dollars, trip after trip to the office, having my kids on a constant stream of antibiotics and even a trip to surgery with lincoln. They are licensed to practice medicine and that is exactly what they do. They find a problem and give you medicine to fix your symptom. I am not saying they don't have a place in your child's health care but I am saying that I have learned a lot. This whole time I know something isn't right. I know that what is happening with my baby isn't normal. Does my baby have cancer in his neck? Some crazy childhood disease or is it nothing to worry about?

Our first visit the pediatrician is sure that she knows this problem of his swollen lymph nodes "He has catch scratch fever." Our cat that is still a "teenager" scratches him every day. Why wouldn't she... Lincoln lays on top of her and tries to pull her tail. She's a good cat but my son's health is more important. each day i look at her starting to hate the poor cat thinking she is making my baby sick. guess what our scratchy cat has been rehomed and the problem persists.

I ask for bloodwork, x-rays and allergy testing. all which come back normal. we are still regulars in the office for ear infections, sinus infections, fevers... you name it. my kids immune system seems horrible. my toddler catches everything... even the swine flu! a year later his swollen lymph nodes are huge and bulging out of his neck... the kid is always sick, constantly on antibiotics,has rings around his eyes, gets ear infections, sinus infections, has chronic fluid in both ears and doesn't sleep through the night (wakes up crying and screaming seeming to be in pain).

i asked if it could be an allergy and i am assured that if the blood tests come back for negative for an allery than he is fine. come to find out late set allergic reactions and many allergies can be present and still not show on that test. seriously how infuriating. finally this dr knew i was going to keep sticking my foot in the door and asking questions. she referred us to an ENT probably to get me to leave her alone. The ENT instead of listing reasons for the swollen lymph node said "come back in 2 months and it has grown we will surgically remove the entire lymph node". Okay... but WHY is it there to begin with???? What is causing this and how come nobody will help me figure it out. On the next the lymph node had grown over 2 cm and now this lymph node brought friends. The large lymph node now had a large neighbor and there was what I would describe as buckshot all inside his little neck on both sides. Now fluid is found in both ears and it's causing his eardrums to bulge. we are hoping we have found the problem. lympadenopathy-caused by fluid in the middle ear- body is fighting ear infections constantly therefore suppressed immune system and swollen glands. A date was scheduled for ear tube surgery. Of course i don't want my baby put under. I cried on the way home and wished and hoped and even prayed that he would be okay.

Lincoln wasn't sleeping well. He never had been a good sleeper and I have tried every method from co-sleeping, crib sleeping, toddler bed, sleeping on the couch, the floor, exhausting him at the park, letting him nap more during the day, putting him on a schedule, letting him sleep with his brother, taking away the bottle at night, the Ferber method all the other methods that actually work in a few weeks for normal healthy children. So many long nights of him screaming inconsolably. I was at the end of my rope. i was exhausted and none of us were sleeping. how can you ever feel rested when you have not had a good nights sleep in a year or more? sometimes he would cry for 20 minutes sometimes 2+ hours of him screaming until he finally would vomit up all his milk. My husband and I screaming at each other every night in the middle of the night because our worry and helplessness has turned into anger. exhausted and frustrated we only had each other to take it out on. Lincoln would toss and turn screaming and finally falling asleep in our bed only to wake up an hour later to start all over again. I couldn't do it anymore. My 2 week old was sleeping better than he was. I was told by his pediatrician "his bad sleeping patterns are because you have brought a new baby into the house and that is traumatic for a toddler" ummm are you deaf lady??? I said he has been a horrible sleeper his whole life.

i start looking for information and i am actually starting to think my toddler has a sleep disorder. Then I am thinking maybe he is having night terrors. He seemed to fit the description: waking up screaming, looks frightened, doesn't want to be held, touched, looked at, it can go on for a long time each night. One web site even went as far as to say to "let your child cry it out and watch from afar so they don't think you are attacking them". Are you kidding me? Hell no am I going to let my baby cry while he is frightened even is he is socking me in the face with his cast (that's a whole nother blog).

the surgery date was finally here and though i was nervous i couldn't help but have hope that this would give him relief from his ear pain and my child could sleep. I let my 20 month old be put under and have both ear drums pierced to insert a ventilation tube that will allow the pressure to regulate and fluid to drain. i was told this will provide "instant relief and he will be a new boy as soon as the anesthesia wears off... no more pain and his ear infections will drop dramatically." it went quickly and he woke up wanting to be in daddy's arms. i was so happy that it was over. i just wanted to get home were i could cuddle him and make sure no noises would bother him. the anesthesia made him sick... and cleaning up milk throw up is disgusting (its something i have had to do many many times and even though i have had a lot of practice... curdled milk barf makes me dry heave) so i gave him juice all day and he slept all night long.. wow... these tubes did it... he's cured. Hes drinking capri sun and he likes it! Capri sun day 2 hardly any milk and the boy sleeps again. Now i see 2 months later that this isn't a coincidence. i don't regret the tubes or the surgery because i do think that this has really helped with his hearing.

The sleepless nights continue and so does my search for answers. I have tried a million things and they have all failed. His problems persist and beyond those first 2 nights after the tubes he is still not sleeping.

Lincoln's surgery follow up at the ENT check up rolls around to make sure that his tubes have healed. The fluid is gone (has been since they drained it the morning of surgery) everything is well beyond healed as far as the ear surgery has gone. His lymph nodes that were supposed to go away are still there. If the fluid in his ear is gone and ear infections are gone why do we still have a problem with his huge swollen lymph nodes. I ask the ENT if it could be dairy. His response was quick "Dairy allergies may or may not be to blame. it very well could be a sensitivity or allergy. Eliminate all dairy and see me in 2 months." I left there excited because I wasn't able to make the life change to go dairy free alone. Now I was being nudged by a professional to eliminate another thing off my "could this be it list". I head to the health food store hoping not to overdraw our account and purchase a few things to try: rice milk and a few dairy free foods, fruits, veggies and meat. THE FIRST NIGHT DAIRY FREE HE SLEEPS ALL NIGHT. I wake up freaking out that something is wrong. Is he alive? We run to check and he is fine. of course i think it's just a fluke... until he sleeps the second night and the third and the fourth and fifth...its been 2 1/2 weeks and i feel like we have found some sort of magic spell. i know by the 3rd morning as i lay there crying that this his diet and his problems are connected. of course it is. i am seeing it work. but i also know how challenging this is going to be for our family that lives on dairy, processed foods and baseball park snack bars. dairy lurks in almost everything we normally consume. time for some major changes.