Andrei Fagurel - English

The travel took a looong time (9 hours), but Andrei behaved amazing. He was great for about 7 hours, then started to be restless, but overall it was a good experience.

Meeting the professor was good also. He is experienced, honest and quite direct. He checked Andrei as thoroughly as possible, noted some more investigations he would like to perform at a later time and… told us he had planned to operate him on the 22nd of November. But now, that he sees him, he thinks it is not such a good idea, because Andrei is… too fat! And he considers this to be an additional risk for the operation, because it means more bleeding and difficulties in preparing the tissue for the interposition (apparently it is very difficult to manage the jejunum’s very fine vascularization in between the fat). So he sent us home to lose weight (he should lose about 3 kilos) and we hear eachother again in Jenuary, hoping to be able to do the operation in February.

This is about everything for now from the fatty boy. Thank you for thinking about us!

After long fights, we finally managed to receive an appointment for a check-up in The Netherlands with the surgeon specialized in jejunal replacement, Professor Klaas Bax, the director of the surgery department from the Erasmus MC Sophia children’s clinic, in Rotterdam. The check-up will be on the 20th of October 2008, so… next Monday.

We will take with us all the medical papers and the x-Rays that we have, a lot of courage and we will move forward. After this ckeck-up, the surgeon will tell us what solution he proposes for the replacement (it is possible that he will not recommend jejunal replacement, in Andrei’s particular situation, but one of the other methods, gastric pull-up or colonic interposition) and when he appreciates he could hospitalize Andrei for the beginning of the treatment.

We hope we will bring more news next week after the check-up.

After a prolongued wait, we have received the medical letter! We have sent it to the insurance and now we are waiting for their answer.

They have asked if the hospital in The Netherlands accepts the E112 form for costs reimbursements between EU member countries. The good news is that they do, so, if the insurance approves that we go there for treatment, we hope we will not have financial issues. But we will see.

Otherwise, the little guy is having fun, kisses us all the time, gets up on his feet on his own and wants to try walking.

I am worried that he has scoliosis and I don’t know just how severe it is, i would like to investigate it, at least to know the degree of deformation and rotation his spine has, and to have a refference point in checking later its evolution.

We are still trying to socialize, we go in the park and gather around all the little girls which we then watch very skeptically. But we persevere in this direction.

I am trying to get him used to the sand, but he doesn’t like the idea at all. When I try to put him with his feet in the sand he gathers his legs like a little frog. He doesn’t even want to hear about playing with his hands in it, he is very unhappy when it sticks to his hands…

These would be all the news that we have for now. We will tell you when we hear something from the insurance.

Yesterday, after a long time of rehearsals with the pshysiotherapist, the little guy finally decided to try and stand up by himself ! He was leaning on the sofa and suddenly stood up !

He is becoming stronger and stronger and he wants more and more to stand up (usually with two fingers of help ) and he is also trying to walk, to make little steps. I tell you, the efforts he makes to make those steps and the concentrated face are really funny.

It’s great that we actually see continuous improvements, even though slow and… made in his own way. Anyway, he can make them anyway he wants, as long as he does improve .

Two weeks ago, on the 24th of April, I discovered that I can move on my hands and knees! So far, I was only “swinging” in this position, but now I discovered I can actually go forward like this! I noticed it’s a little easier than crawling on my belly, and I have been practicing this ever since. I am trying to go faster and faster, so that mommy and daddy will no longer be able to catch me .

It has been a while since I posted any news about Andrei. That is due to the fact that, thank God, he was constant, relatively stable, and we have been very busy caring for him because he becomes more and more active as he grows up.

He only had one bronchitis, about 3 weeks ago, but he managed to recover and, happily, there was no need for us to be stationed in the hospital, we gave him the treatment at home and it worked well.

But now I have some great news to give you. We are very happy and we want to share Andrei’s success with you. Since Friday, 4th of April, Andrei is without Oxygen tubes in his nose! Starting from the 2nd of April, we had seen while monitoring his oxygen saturation, that he is doing very well, so we had stopped giving him additional oxygen. On Friday he was still doing good, so we took our chances and took out the tubes. With God’s help, he still is at this moment without them. He manages to breathe by himself, without any supplementary oxygen!

If you tell this to a doctor, he or she would say it’s normal, that it was supposed to happen at some point, but for me it’s not easy to describe the feelings I had that day. First of all, I was euforic. Unsecure. Trustfull. Afraid. Hopefull. And so, all of these feelings led to the fact that, for about an hour after I took the tubes out, I trembled. Not of fear, but excitement. I knew nothing bad could happen, because I would have been able at any moment to put back the oxygen tubes and turn on the oxygen. Anyway, during the first 2 days after this, we kept him monitored all the time, to check his oxygen saturation. And still… my hands were shaking because I was happy. Sure, I knew this would have happened at some point in time, I had hoped it would, but I guess it had not occured to me that THAT was the moment.

I know it is a little difficult to understand all this loong story if you don’t go through something like this (and, honestly, I wish NOONE to have go through something like this) but maybe it helps a little if I also tell you that I had never seen him before without the oxygen tubes in his nose or some other form of breathing assistance, in his entire life, that is for 2 years and 30 days, for more that a few minutes, for instance when we were changing the tubes, and at those moments he was crying desperately.

It is very nice to look at that sweet face WITHOUT tubes, to be able to walk around the house with him without stepping on any tubes, it’s nice to know that he can play without getting himself all wrapped up in tubes, for me to be able to dress him up and also to undress him without going through the whole “ritual” of putting the clothes on or out of the tube. There are many things that come together with the oxygen dependency, other than the health problem itself.
And guess what was one of the first things that the little boy did: he put his little exploring finger in each of the nostrils!

It is possible that this is only a good period for Andrei and, when he catches a cold, and most probably after the next (and hopefully last) operation, that he might need the oxygen again. But the fact that he is stable now, without additional oxygen, gives us hope and confidence that he is getting better and that he has made great progress. And, after all, we agreed that we can allow ourselves to enjoy these moments, because we don’t know anyway what the future has “in store” for us, from Andrei’s point of view. We are living right now on the “seize the moment” philosophy. And, happily for Andrei, we are still living this happy “moment”.

I have also put on the website pictures that prove Andrei’s great success.

Andrei celebrated today 2 years of life and chubby cheeks!

It was a very nice day, we celebrated in the family. Andrei received a lot of presents and got to blow the birthday cake candle .

With this occasion, of course, I think of everyhting that happened in the past year and my conclusion is that it was a good year for him. He was at home almost THE WHOLE TIME, except for one week when he had a pretty bad cold, he had fun, he grew, he developed…

I guess it’s a good moment to make a summary of the past year, right?

- Andrei went for a lot of long, nice walks that he enjoyed very much
- When he was released from the hospital, last year, February 2007, he was diagnosed, among other things, with anemia. Now they say he is too fat
- When he was released from the hospital, Andrei was diagnosed with muscular hypotonie; he could not turn, get into sitting position, he was playing very little, as a small baby. Now, Andrei cannot be stopped from turning and moving, he gets into sitting position by himself, he crawls, he plays nicely. Sometimes it is amazing how fast he understands some things
- When he was released from the hospital, he was only talking like a small baby. Now, he started saying mommy, daddy and to imitate us
- When he was released from the hospital, he did not accept anything in the mouth. Now he started licking with interest whatever we eat, he sometimes bites, chews, he has learnt to coordinate the movements of his tongue
- If you give him 2 fingers to lean to, Andrei manages to raise himself up
- He just learnt to make a few steps forward in the baby walker
- HE LEARNT TO KISS US !
- He laughs and anticipates when you show him you intend to tickle him
- He is starting to respond to simple commands

And for sure there are also other achievements… For now, these were the ones that quickly came to my mind.
May God help us that the future will be at least as good as this past year !

We thank again all of our friends for being close to us and for thinking of us fondly !

Andrei made us one of the best possible Christmas presents: he started to crawl by himself. He still doesn’t move on his hand and knees, but he drags himself, laying on the belly, on his elbows and pushes with the feet. I was told this is the first step they make towards moving by themselves and we are very happy he started doing it.

I celebrated my name anniversary with mommy and daddy. I received as a present a biiiig race track with two little cars and we all played with it, it’s really funny. We had a lot of fun, we made laughing therapy .

I want to thank here also my friends who thought of me and congratulated me! I was very happy to see that I have so many friends that have such nice, warm thoughts regarding me and who wish me to get better.

Ever since I managed to sit by myself, I liked it so much that, as soon as I am laid in bed, regardless of the position, I get into sitting. I love to sit, I can look around, reach for the toys, what more can I say, life looks better from this angle. I am telling you, I am unstoppable !

Andrei managed to finally get into sitting position by himself today !!!

Of course I, in the “key moment”, was not looking, I had just turned to get some food for him, so I don’t actually know how he managed to get into sitting position from laying on the belly. Anyway, it all seemed very normal to him, he only had a lot of fun when I started laughing around him, hugging and kissing him . He did not want to repeat it today, but at least he showed me he can do it, so I’m quite happy about that.