Hi there

I posted on this board a while ago under the heading HELP ME!.

Well, Samuel went to see the surgeon who performed his reflux operation in December. We were told that although they told us he could not vomit, that he can actually vomit as long as the food is the same colour going down as it is coming up then that is fine! The name of his operation was Reflucjo gastrosofogico intermido tecuica boix-ocha in Spanish, which I think means intermediate reflux gastro 'something??' 8, does this ring a bell with anyone??? The surgeon who told us first of all he could not bring up wind, has now said he can sometimes, which he does.

Samuel also went to see the Neuro-Ped the day before this appt. The Dr did not know Samuel (Every other dr in the hospital does!!), he banged his knees & checked his reflexes, he then told us that Samuel is basically backward!! He said that he needs physio, also extensive physio & 2 scans done. He said he should be saying Mama, Dada etc.

Samuel was in hospital for 8 months & endured 5 operations. We have only had him home since December, we feel he is coming along great. He can crawl, pull himself, ga-ga to his hearts content, eats lumpy food, he is very alert, knows when Blues Clues & Dora The Explorer is on tv!!

We told Samuels ped on a routine visit what he said, she went mad & said we were not to do anything about physio etc. until June when he sees his own dr from hospital.

Also, he is going for an x-ray that this dr wanted on Friday, but he has to be anethatised (? Spelling) & we will be in hospital for 5 hours. Then next week he is having an x-ray & we have been told he is not allowed to sleep in the day before x-ray, he has to go to bed at midnight & get up at 5am & not sleep until after his x-ray! Whats this about??? I will have a few questions when I get there I can tell you!

Thanks for listening.

Tracy

How did the x-rays go, Tracy? Do you find out why Samuel had to be so sleep deprived before going in?

Hi Janette

The tests he had were an MRI scan where they gave him gas, it took about 10 minutes. The other one where he had to be sleep deprived was loads of wires attached to his head & chest, then he had to fall asleep for half an hour to test brain activity, hence the sleep deprevation. It was awful. Samuel has also had this done before, so really he should not of had to endure this again. We go for the results on Thursday 10th June, so I will keep you posted.

Good news, we have just had a carpet fitted in our front room, as it all tiles over here in Spain. It has only been down 2 days & Samuel is getting up on his feet & walking around the furniture, he is crawling on fours, playing with toys & falling over & not hurting himself, it is fantastic to watch. A few tears have been shed this week!!

He is also as physio, but they are really pleased with him, they have said he only needs help with his walking.

Thanks for looking out for me.

Tracy

No doubt about the tears, Tracy! The little things mean so much more with our special needs children, don't they!?! I look forward to hearing Samuel's test results. By the way, how old is he now? Also, your English is so good that it's obvious you're not originally from Spain. (Your first name gives that clue too...) Are you Canadian, Americain, British or other? (Just curious...)

Hi Janette

I am British, have been living in Spain for 2 years this month. I have found it very difficult here with the language barrier. I was learning spanish, but then being at the hospital for near on a year all told, I didn't go for lessons. My husband speaks fluent spanish, but he cant be with me all the time I suppose.

Samuel is now nearly 15 months, he was born 22 March 2003. It has been very hard, but oh so worth it.

How many children do you have? Do they all suffer from reflux?

Tracy

I visited Spain a couple of times. The first was when I worked in France as an au pair. I went to spent Christmas with missionary friends of mine in the south. I had only learned one expression from my boss, that being "No hablo espanol" (I don't speak Spanish.) I guess I had learned it too well. We were in a train station sitting by a news stand awaiting our next train. Someone started talking to us. I used that one expression and boy did the man get mad with his "Si si si" (Yes yes yes)! It turned out that he wanted us to move so that he could open his news stand. :oops: :roll: Needless to say, I took a Spanish course before visiting Spain the next time, because I found that hardly anyone could speak English, French or German.

You said that your husband speaks fluent Spanish. Is he from there or did he learn it as a second language? In what part of Spain is La Nucia?

I have two boys. Brandon is nearly five years old and perfectly healthy. At age two, he spoke in very long sentences (ie, 17 words) and knew all of his colours. He is also very active and loves sports. Evan is 26 months. I knew at his birth that something was wrong, but it took until he was about 15 months old for doctors to finally listen. He has global developmental delays (gross motor, fine motor and speech) and GERD (reflux). He has a dietician. He also has physiotherapy, occupational therapy and speech.

Next Friday, we will be travelling to another city to see a geneticist. We hope to finally have some answers. Our MRI will finally be at the end of September.

As an encouragement, Samuel sounds so far ahead of where Evan was at that age. Brandon walked at 15 months, but Evan only started to crawl in January at 22 months. Since then, he's climbing onto furniture and up the stairs, cruising and walking holding onto just one of my fingers.

Is Samuel your only child? Does anyone else in your family have reflux?

Hi Janette
Sorry it has taken me a while to reply, but I have been really busy.

It sounds like you too have been through the mill, I wish you all the best with the forthcoming geneticist appointment and MRI scan. Will Evan have to be put out for the MRI scan like Samuel was?

We had the test results last week for Samuel. Luckily for me I got the appointment time mixed up & turned up 3 hours early & the head Neuro-ped saw us. He was really pleased with Samuel & said the results were very good. He said he has a slight lesion on his brain, but this is nothing to worry about, it is from when he was born & had convulsions. We do not have to go back & see him until October. In the meantime, Samuel just has physio every Thursday. And check-ups every 3 months at 2 hospitals & the health centre!

He said Mama & Dada this week, I cried!

Samuel is an only child & as I had such a hard time with pregnancy & the birth (had to have a c-section as I have a bent birth canal - Only happen to me eh!!!) we shall not be trying for another. However, we may adopt in a few years.

My husband went to school in Spain, his parents live here as do the rest of his family bar 1 sister & 1 brother. La Nucia is about a 40 minute drive from Alicante. We are about 10 minutes from the sea, but we have mountains at the back of us it is lovely.

I have always wanted to visit Canada, but I am scared of flying, maybe one day!

Let me know how you get on with your appointments.

Tracy xx

Hi Tracy!

That's so exciting that Samuel said Mama and Dada this week! Way to go Samuel!

Evan has been saying Dada for ages, but finally started saying Mama on Mother's Day. I, too, cried! This past week he started to say two different syllables together (ie, bada). I know that his speech therapist will be as excited as I am!

Regarding the MRI at the end of September, Evan will have to be put out too. That means absolutely nothing to eat or drink before it, and we have to drive an hour and a quarter to get there. Yuck! I hope that we can just transfer him from his bed into the van and that he'll go back to sleep again, but I doubt it. It'll be a long drive down...

I was absolutely thrilled with the geneticist we saw on Friday. For the first time ever, we met with a doctor who actually agreed that there's something wrong with our child. He just looked at him and knew. I didn't even need to try to convince him, like I've been doing with other doctors for the past 2+ years. I just had to cry on the way home...to actually finally find such a supportive doctor. We did blood tests (horrible...screaming...), and an x-ray of the hand (bone age), and tried for the urine test. The nurse put a urine bag on, but left it open at the top. I questioned her about it when we checked it and found the diaper was a bit wet, but she said it should be fine. After an hour and a half of giving Evan juice and water, he had finally peed enough...in his diaper. By then we had already been at the hospital for nearly four hours and he was sick and tired of it...Time for a special outing to McDonald's with Mommy and Daddy. We'll now have to take a urine sample along when we go back at the end of September for an MRI and an MRS.

Unfortunately, all of the presently known tests can only reveal 20% of the possible syndromes, etc., but at this point that's a chance that we have to take. The doctor suspects that these will all come back negative, but we need to start ruling things out. The next step may be a sweat test for CF. I highly doubt that he has CF, but because of the constant ups and downs with his weight (caused by reflux), the doctor wants to rule out CF. If everything comes back negative, I don't know what tests he'll want to run next. The only problem is that he wants to see Evan a year from now. That just seems so far away.