|Jun 28, 2008|
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Vacation and More-LongHi Everyone. I'm getting ready to visit the in-laws in Wisconsin. And, my DH just informed me that my mother-in-law DOES NOT HAVE INTERNET!!! oy!!!!! lucky for me, i can get on the net via my phone but not on this board--just to check e-mails. i do know, however, that my sis-in-law has access so maybe i can at least keep up on the posts. just wanted to wish everyone a happy week!
I've been so busy with doctor appointments and packing that i've not had time to update my blog nor post what is going on with Coy. Several times in the past he's kinda 'spaced' out on me. My mom figured he was peeing or thinking ( i posted to sarah about this) but he had one last Sat. that lasted 20 seconds. so, our pedi had us referred to a neuro. His EEG came back normal and the neuro said his anxiety level concerning the staring is about a 1. However, his anxiety level concerning Coy's muscle tightness is about a 3-4. I've told everyone in the family, my doctors, etc. that coyle has very tight muscles-FOREVER! diaper changes, clothing changes, everything has always been so difficult. anyway, no one wanted to do anything about it until now.. the neuro did diagnose him with hypertonia. so, next month i will start taking coy to therapy 2X a week.
the reason i'm so concerned is that he also has a lazy eye (which i've been patching him for) and now these staring spells. the constellation of symptoms is pointing to cerebral palsy-at least for me it is. however, no one is willing to diagnose him nor do they say that you can diagnose this early. is that true?
i guess i've been kinda down lately too. i feel like everyone in my circle of friends-outside of this board-can no longer relate to me. all of us girls all had babies around the same time (and some have older children aged 1-3) but no one can say that their child sees 5 doctors on top of their pediatrician. no one i know has to patch their son's eye 4 hours a day, take him to physical therapy 2X a week, has to deal with hypospadius and a heart condition, has been puked on for almost 10 months, nor has a child who can't eat anything solid without violent vomit, eczema, or a reflux flare. i don't want a pity party or anything. i just know that all of you moms understand. you understand what it is like to dress your child 5 minutes before you leave for a wedding (where we went today) just so you don't get puked on. except your husband forgot to put the bib on and then the second he passed him over to me he puked all over the both of us!
i love my son more than anyone or anything in this universe. i just don't understand why he has to be put thru so much. and sometimes i wonder if my girlfriends think differently of him too, you know? i also don't feel like i can sympathize with them when they complain about "normal" issues such as teething, illness, or bratiness. i know that sounds selfish and i should support them but i am so not in the mood...
thanks for listening
|Jun 29, 2008|
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
|Hugs! I can kind of understand what you're saying. It's kind of like when my friend was trying to conceive and I was pregnant. Neither of us knew how to talk to one another. It was very uncomfortable. Eventually it all worked itself out. Friends are friends...they'll be by your side in the end! Try not to worry...my mil would tell me "don't borrow trouble". You can't do anything about what might be...just try to take it one day at a time. |
Hope your trip goes well.
|Jun 29, 2008|
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
|I can understand where you are coming from. M looks and acts (for the most part) completely normal. Besides the GERD, he has hypotonia, dyspraxia, and sensory processing disorder. We have regular playdates with some of his classmates from school and their moms had NO idea that there was anything going on. I made it a point to develop a few friendships with gals who have kids that have issues similar to M's. Is there anyone who you see regularly at his therapy sessions or a local support group? As the pp said - one day at a time - although I must say that I can't tell where some of mine begin or end. :)
I hope you have a great trip! Libby|
|Jun 29, 2008|
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
|No internet?!?!?! She's living in the stone ages! LOL!
I am so sorry to hear about Coyle's diagnosis. I understand what you mean too, you think you've got it all under control and the along comes ANOTHER ISSUE.
I can also completely relate to feeling like no one understands your life. We were first out of our group of friends to have a child, so that makes us different. Then to have a child who I have been through so much with makes me that much more crazy in my friends eyes. I know based on little remarks here and there that there have been discussions on my "craziness" about Lauren's nap schedule or how they all have to call before they come over or the fact that I won't let her eat so many things. I really feel like sometimes I just don't fit in any where with anyone outside of this forum too.
I hope you have a relaxing trip to your IL's :)
|Jun 29, 2008|
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
|I'm so sorry you are struggling right now. Heaven nows we have all been there and it is no fun. It is so hard when you are the only one with concern for your little one. You know a few months back we dealt with the whole CP thing. It was awful. Our pedi told us Cooper had several "red flags" but would not dx. I think they like them to have more milestones to have missed prior to giving a CP dx. And it is such a blanket terms and the spectrum is so broad. And hopefully things will turn around soon. I hope the therapies make a world of difference. You had asked in my post if we had done therapy w/ Coop and we have not. The one thing we have done that has made the biggest difference by far (the reason I believe he can sit and is trying to crawl) is started seeing a Chiropractor. He is wonderful and has showed us how to work with Cooper. His muscle tone is so much better since we started this. I would say it is defiantly worth looking in to. I hope things get better for you guys very soon. Hugs!|
|Jun 29, 2008|
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
|I wrote to you on myspace, my dear. I feel your pain and am soooooooooooooo sorry.||Check with your