Dear Family and Friends,

 

September 2009

 

As so many of you have followed along and prayed for Lorena's health I decided to send an other update as to how Lorena is doing. Lorena is 20 Months now and we are still overcoming more challenges. Her eating is becoming easier and easier and she is also able to hold it down better and does not seem to throw up as easily. That is I think a combination of Lorena doing better with not getting sick as fast as well as us knowing exactly when to stop feeding. Lorena tends to eat half of her meal and then the rest an hour later. So less per meal but more often per day. We still feed her 6 times a day.

 

A day or so after Lorena's last immunization, Lorena was shaking/trembling like a leaf and could not stand up without shaking badly all over her body. She choose to sit most of the day. She also started to throw up most of her meals for about a week and I panicked and thought we may end up lapsing back and she would need to be fed through a tube again. The trembling has gotten a lot less but still when we told our doctor, she wanted to get Lorena in right away for blood work and to see a neurologist. So we spend an afternoon at the children's hospital once again. The neurologist told us that Lorena has  Acute Cerebellitis. This is a bad reaction to the immunization were it caused inflammation in her brain which in turn causes the problems in motor skills and thus her trembling and in some cases Cerebellitis causes death. In all honesty when we seen her loosing her stability and control over her muscles my question was "Why Lord, has she not been through enough, what is next? Still I know the Lord gives us strength to continue on and know that He is God and he holds our lives in his hand. Today I can only praise and thank our Lord that the Cerebellitis did not cause death in Lorena. Currently she is still unstable on her feet and tends to stumble and fall more and trembles most when straining certain muscles. The wonderful news is that it will heal but may take up to 6 months for her. We will not allow Lorena to have any more vaccinations or flue shots, the risks are to great for her. With the flue season coming on we will continue to keep Lorena out of the church nursery to avoid flues or cold for her, hopefully. The very thing we choose to give Lorena for her protection is causing more harm then good to her. Still after this diagnosis the doctors are still a little baffled as the vaccines she got are not the most typical once for causing Cerebellitis. So an appointment was set up at the childrens hospital to the child diseases clinic for October, I think they may also investigate if there could be any other reason why Lorena is so unstable on her feet now and becomes shaky when she strains her muscles. I thought long and hard weather I should write about this in the update as I know there are some family members who feel it is wrong to immunize (as they call it a lack of trusting God or for other reasons) and I know some will judge us for having done this especially now that things went wrong. Still I feel it is our God given duty to do all we can to protect our kids and we carefully choose to get Lorena immunized as we were adviced that she would have a much harder time fighting any disease then the average child. Believe me we are feeling bad enough without anyone judging us for it.

 

We were also send to get a blood test to check other possibilities for causing the shaking. This is no fun, with Lorena getting older and more aware she starts to cry loud as soon as she sees the door of the lab.. The doctor called with the results and everything seemed normal except there was maybe a problem with her thyroid. We were asked to take Lorena to the lab for giving more blood again to double check. The doctor called again that the blood work confirmed that Lorena has low thyroid problems. This is totally unrelated to her being shaky but it is concern for more health problems if not treated. If left untreated without medication the low thyroid would cause, constapation and tieredness and in toddlers it would cause set backs in her development and learning skills. So we now have Lorena on medication for her thyroid for at least a few years and we hope and pray that this will help her and not cause some other bad side effects.

 

Still an other more private problem has come up for Lorena for which we were prescribed a cream but it is a hormonal based cream and we don't like the long list of bad side effects. We are scared of anymore side effects. So we have decided to put it off for now and discuse if there are any other possibilities on our next doctors visit. 

 

I think weary is the word to use. It is the one thing after the other and it is tiering us out. We so much want out girl to not have to keep going through more and more health problems yet at the same time we know we can not complain as it is amazing that she came through so much and even her heart healed for the most part so that no heart surgery is needed. Still we would covet your prayers for a speedy recovery from the cerebellitus as well as that the hole in her heart may grow all the way closed and that Lorena would outgrow her thyroid problem.

 

Still we feel blessed as for months (or more like years) Lodewyk's job at Nortel was so unsure but this last month we got the great news that he is hired on by Ericsson the company which bought part of Nortel. Which means that Lodewyk will not lose his job and he can continue to work from home as he has done for the last year and everything stays the same except that he will be working for this new company.

 

Jeremy's eye therapy is going really well. We got his eyes tested and it seems that he has improved at a faster rate then expected which will mean less eye therapy each day and appointments then we had planned. He will be getting his new glasses soon. When Jeremy started his new school he kept getting sick (vomitting) every morning so that he could not go on the bus. It was most frusterating as we paid out so much money to get him into that private school. We started to bring him in late each day until he slowly got used to getting up early and now he is able to go on the bus again without getting sick. We are so glad Jeremy likes his new school and seems to have made some friends. His class has just 6 other kids in it and they help him with the learning learning difficulties he has because of his eyes.

 

 

We had a wonderful vacation and did some camping at Sylvan Lake when the weather was hot and also went out for days here and there. Janita had her 16th Birthday and she wanted to eat at the Calgary Tower. This was lots of fun especially since we Calgarians had never been in the Calgary tower before. She also had an early camp out birthday party and so all those girls slept under the stars in our back yard. Janita has started to teach her 1st piano student this year and is still looking for more beginners to teach.  

 

Fall is here and soon winter will be upon us again. We look forward to letting Lorena play in the snow for the 1st time (as the other winters we kept her in for fear or catching a cold). We visited the Lacomb corn maze last weekend and got totally lost in there, that corn all looks the same. The kids enjoyed it very much and Lorena loved to see the farm animals they had there.

 

October 2009

 

Before sending out the update I want to add what else was found in the last visits. In Sept. at Dr Eccles appointment Lorena got a chest xray done to check if the diaphragmatic (internal) hernia that was fixed in the operation is still fine. It was heart breaking to stand there as a mom not being able to hold or comfort her as she was crying so wildly. They had to set her in a plastic "see through" cylinder which opened and clamped closed all around her and was higher then her head. Her little arms stretched straight up and there she sat all stuck and just screaming. I stayed in the room, behind a shield, just speaking soft words to her in an effort to comfort her while they took the xrays. Yesterday on Oct 8 we went in to see Lorena's doctor and she informed us that the xray showed 2 bulges on both sides of her chest. Still the doctor was not sure if they were new hernias or what. So she told us that she was going to contact Dr Eccles to find out and then get back to us next week. We hope and pray that they are not internal hernias and that no more surgery will be needed. The doctor also told us we could wait yet with the hormonal based cream and leave that for a later year to deal with. We were also told again that as Lorena grows her scar on her tummy will start to appear deeper and deeper on her body because there is no fat under it and that Lorena will need an operation down the road to fix that. Dr. Eccles would do this for us but for now I just push that away and try to deal with everything 1 day at a time. Also yesterday she was weighed and she grew very well at 1/2 kilo in the last 6 weeks, so we are very pleased about her weight gain.

 

Lorena continues to cause us worries but the joy she brings into our lives by far outweighs our worries. Just by looking at her she looks like a healthy girl now and none would guess that her little body has been through so much. We are truly thankful for how well she is doing and hope and pray that no other things are going to come up, we would love to have a break and have some carefree time with her now.