Hola Family and friends!
We hope that everyone has had a WONDERFUL 8 months of the year and are ready for the last couple of months left of 2010!!! As for us, well, it has been DEFINETLY an UP and DOWN kind of year. So much has happened in the last 8 months that sometimes I am just in awe of what has gone on!! J I haven’t give anyone on update in a VERY long time so I thought I would go ahead and get one out…
Well, as a family all is wonderful. We are enjoying life and being together as a family. Nothing makes us happier than when we spend time with each other. Having the blessing of being able to be together and watch our children grow, is just such a GRAND experience and we THANK GOD everyday for such blessings!! We have done a couple of camping times. This summer, we took a 2 weeks vacation and did some RVing and spent some time at the coast. Just tons of FAMILY time. Since we have a pool, boy, we have DEFINETLY had some great use out of it. The boys LOVE going swimming!!
Well, our little alex is now 8 YEARS OLD!!! Wow, it is just AMAZING to me to have an 8 years old in our house. And he is GROWING by leaps and bounds. He is out of his 5 point harnest and into a booster chair now. That is a big thing for him. He is such a cutie. He is now in 3rd grade and doing FABULOUSLY in our homeschool work. He has a Monday playdate and a Tuesday PE class and he LOVES it!!! J just watching him play with other kids, is great. We usually have a very busy schedule and he still manages to IMPRESS me in how smart he is. Just watching him think his way thru a problem or read something and then remember what he read and know what it talked about is just so amazing to me. He loves his baby brothers and just has so much fun playing with them. He is such a GREAT big brother!! J
Then there is Matthew. Well, matthew is now 6 years old. Again, AMAZING! He has been thru some rough roads with him since the beginning of this year. Lets see, he started the year off with RSV, went on to have KAWASAKI SYNDROME and was hospitalized for 4 days, and now, well, the scariest of all things is happening to matthew, and we are asking for MANY MANY MANY PRAYERS for this little boy. For a while now, he has been REALLY restless during the night and was ALL over the place, so I called his neurologist to let him know that SOMETHING was going on….well, On June 29th, he had massive seizure that we had to be taken to the hospital via EMS….he then had a 24 hour video EEG done and come to find out that he was having seizures in the front and back ALL THE TIME. As he lay sleeping at 0700, the dr walked in and was watching his monitor and said that he was having seizures the whole time…that was just so HEARTBREAKING for me to hear! I knew SOMETHING was going on but was so hoping it was not THAT!!! So, we were placed on a new seizure med called VIMPAT on top of his other 2 seizure meds…and these sezirues are VERY different…not like anything we had ever seen. The other scary thing is that he stops breathing with these seizures and we have had to BAG him, which we personally have never had to do. Usually the EMS crew does it. Well, not anymore…and what a horrible feeling it is to have to BAG your son with oxygen, have him BLUE, totally unresponsive & his Oxygen sats down in the 40’s…well, since the 29th of June, he has had a 2 more seizures in July and 5 in August and here we are on September 1st and I PRAY that they finally STOP!! If you can imagine, it went from 2 seizure in 2 YEARS to 8 seizures in less than 2 MONTHS….A new seizure med was started on Aug 30th and we are back on CLONOPIN so we are now officially up to 4 seizure med….not HAPPY! And it makes HIM not happy. You can tell it is definetly affecting him because he is REALLY sleepy and very irratible! My poor little boy. we are now thinking of getting some NIGHT NURSING…yep, the one we said we would NOT get but because these seizures are not your regular ones and they are happening at ALL hours of his sleep, I am not getting much sleep at all. I actually have a CRICK in my neck from turning to look at the monitor every couple of minutes…I need someone to watch him sleep!!! L So, what we are going to start in this coming month is, he is going to be placed on the KETOGENIC DIET which has been known to help with stopping seizures. So, they will take him off of his current G-TUBE formula (peptimum, jr) to a KETO-CAL formula. I read up on it and basically, it is a LOW-CARB diet…I THINK we will be admitted into the hospital for a couple of days…NC Baptist I think…and if he does well on this, then HOPEFULLY the seizures will have stopped, maybe some meds taken off and all will be well..PLEASE JESUS, let it all go WELL!!!! But other than that, he is doing AMAZING!!! He is in 1st grade now and he is getting SOOO BIG! He is so smart too. I love when he talks to us or he tries really hard to tell us something. And the BEST thing that came out of his seizures is that he is EATING ORALLY LIKE A CHAMP! Yep, my little boy is LOVING eating. He wakes up and signs EAT and he eats breakfast, lunch and dinner. And I am talking he EATS not just nibbles. Could be why he has gained so much weight!! He is now 42 lbs!!! he is getting HEAVY! But he is such a cutie and he is getting so strong. Unfortunately, with these recent seizures, he has had some weakness now that is causing him to be MORE LOW TONED….i just pray that he gets his strength back SOON!!! He loves his brothers and loves to challenge them! He is SOMETHING else when he gets MAD at one of them. He will sit there and YELL at them if they are having issues. So cute!!! That is our little boy!!
And then there is JOSHUA who is now 3 years old. Wow, this little boy is SOMETHING else. I love him SOOO MUCH but he is the 3rd child…he is the one that gets into EVERYTHING…and he is currently into the terrible 2 at 3! He favorite word is NO or UH-HU…and he is a little con artist cause he will say in a whiny voice’no alex, stop’ and I will catch him saying that and alex is across the room or something and alex is like, I am not even touching you!!! So, he tries to get brother in trouble all the time. He is also very LOUD…he loves to sing but LOUDLY, he loves to play but play LOUDLY…my ears are usually ringing by the end of the day. But he LOVES to play with alex and he love to tease matthew. Such a CUTIE!!!
Well, james is doing very good. He is at a new unit here in san Antonio so that means that we are STAYING in san Antonio!! J either way I would have been happy but now especially with Matthews seizures, I am so glad we are staying here..we are hoping that he gets his promotion soon so then we can start looking for a new home…he finished PHASE 2 of his BNOC school….we REALLY need a one story house….matthew is getting soooooo heavy and with his recent seizures, he is almost too weak to go up the stairs on his own and we have to carry him and he is HEAVY!!! Anyway, james is doing well and he is gearing up for HUNTING SEASON. Yep, let the shooting begin! One of his favorite sports! He started TODAY at his new job and it is at CAMP BULLIS now so a bit closer than where he was at before. I feel sad for him because his whole unit before is now all scattered around TEXAS …they were sooo close. I know they will stay friends but no longer work together….
As for me, well, so-so…I am ALIVE and I am BLESSED so I really shouldn’t complain. But since my surgery back in feb 2010, my body has not been the same…I have been back and forth to the doctors and surgeons trying to find out WHY I am continue to have gastro issues…I have had colonoscopies, blood work, scopes, etc and they still don’t’ know what is going on. I wonder if they injured something while they did the surgery…anyway, I just wanted it FIX cause it is LIFE ALTERING what I am going thru…my fibro is kicking my butt too, but again, with all the stress of the surgery and now with matthew seizures, my little body is going nuts! J
But THANK YOU GOD, our little family is doing well. We have started up on our school year again and we are enjoying doing classes. Waiting for the HOLIDAYS to come. It is just around the corner now!!!! We take one day at a time and we take our evenings very seriously. We have tried to keep matthew to a strict in bed time of 8:30 to make sure he gets plenty of sleep. So needless to say, we are ALL on a schedule now. We tend to notice if we have had a LONG day, he will end up with a seizure!!
So, we hope this letter finds everyone doing AMAZING and well. We ask PLEASE if you can please pray for our little boy, MATTHEW that his seizures resolve and he has them NO MORE. I am so sad for him because now with all these meds, he is not the same little boy…he is really tired all the time and GRUMPY!! GOD WILLING these seizure meds GO AWAY!!!
Thanks again, everyone!! until next time, TAKE CARE AND GOD BLESS!!!
James, Maria, Alex, Matthew, & Joshua
Thursday, September 02, 2010
Hola Family and friends!