Power House at Sherman Bible Church

Entry into "Power House" with the fabulous Julie & Connie


K-4 play area (and our play area during the week...for now)



Hudson & Madi


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The big kids (Madi & Kailee) and the littles....Hudson and Madi (there is now a guard rail on the above stage)


Hudson & Madi way up high


Ty man!


Hudson and Ty playing as boys do (the little girls didn't even think about doing this)

Hannah (Ty's big sister) & Madi

LIFE IS GOOD at SBC!!!

I am up late waiting for Jordan to come home from Homecoming (his school has it during BB season as we do not have a football team).   I love staying up late as the house is quiet...just wish I didn't have to pay for it the next day.

I have LOTS of fun pictures to post of our new church!!!!  Tomorrow will be our first service and it is amazing!!!  Hudson and friends played in "Power House" (the kids area) a couple weeks ago so when you see the pictures you will understand why when we pulled up last Sunday for our final service he said "I don't like this church anymore, it is boring!".  

Every day Hudson is feeling better.  He had a few rough days this week but overall has done really well. He is so sweet to ask me if he can eat something, asking "is it soft?"..one more week of his soft diet.   Tuesday night he was pretty miserable and was running a temp.  He wasn't talking as he was so sore but as I held him I asked him if he was happy to be home and he said "yes, I'm free.."  He hates the IV's and leads in the hospital so he was referring to not being tied up anymore....even feeling so bad he makes us laugh.

As of yesterday we are weaning him off of his anti-seizure medicine over the next month.   If he has another seizure his neurologist will order another EEG and probably MRI.  He does want a sleep study done on him as he feels his sleep apnea should be taken seriously so when we go for his post-op on Wednesday I will talk to his ENT about getting that done.  

Some have said they couldn't view my wordless wednesday photos.  Very strange, I can see them from my work computer and at times from my mac but other times I can't.....any ideas?  They were of Hudson before surgery, his silly juice was kicking in and man, was that boy funny.....the nurses all came in to be entertained by him when they heard us laughing.

Jordan is home and it is time to hit the hay!

bye bye Tonsils-*Update

*Update-All went well and we were back home by noon today.  Hudson is a trooper and doesn't appear to be in too much pain.  We head back to the neurologist Friday to discuss treatment for his epilepsy which we expect is to slowly wean him off his RX!  Thanks for your prayers....again!!


Wasn't even trying to get a picture of Hudson's "interesting" tonsils as the neurologists in Kansas City said  but you can see here how big they are....

The whole tonsillectomy started when Hudson's dentist didn't want to fill a small cavity in the office due to his HUGE tonsils.  He called down to his surgeon who we had an appt with the following week so his surgeon took a good look at them as we were discussing dates for his p-flap.   He explained to us how as you grow your tonsils shrink.   He does not want to take the chance of doing his p-flap and then wiping out all speech progress as he grows and his tonsils shrink.   They have to take intricate measurements for his p-flap and even small shrinkage can mess it all up (God is amazing isn't He?  I am learning speech is SO much more than making sounds.  Did you know your uvula is only there for speech? Hudson doesn't have one.....)  His p-flap is a MUST as he will be unable to make certian sounds without his soft palate.   I dread the p-flap surgery as it is the MOTHER of the cleft palate repair series (and not always done), very painful and a miserable recovery but we are also excited to see his speech blossom afterwards.  He is doing so well with speech and most people understand him now but he still doesn't have the ability to make certian sounds....like t's...anyway, the tonsillectomy is sort of a hic-up along the way we hoped to have avoided but oh well....his p-flap is scheduled for the first week in May....we have to wait 5-6 months for good healing after tonsillectomy.

We will be in the hospital overnight.  Between the bleeding precautions they want to take and his anatomy obstructions they are being extra cautious....short surgery but it will be a long 30 hours in the hospital....

...probable..."Panayiotopoulos syndrome"

We walked away from Hudson's neurology appt feeling very relieved and reassured. We won't have a true diagnosis until his EEG report and pediatric neurological consult are reviewed by his neurologist in Dallas but he is pretty confident he has Panayiotopoulos Syndrome or Early-onset benign partial epilepsy with occipital paroxysms. (If interested in reading more HERE is a good overview and almost EXACTLY what we experienced).     This is a fairly new diagnosis of epilepsy but also a very common form of epilepsy.  It usually presents itself between 3-5 years of age and seizures most commonly happen during sleep.  Of course we have been most concerned when he sleeps but he reassured us he is safe while sleeping.  I asked him if we would know if he had had one in the morning and he said most often we would find his pillow soaked with drool...well, hello...that has happened.  We have always assumed this was due to his cleft.  He explained to us it isn't just drool..but the pillow COVERED, soaked....yes, we have experienced this.

The treatment is generally to do nothing and they grow out of it.  He has kept him on his RX for now and we will discuss exactly what he wants to do when we go back in two weeks.  He also said these seizures can last hours and if he isn't convulsing and his breathing is fine we just watch him....DON'T know how i'll feel about that IF we experience that but hopefully we won't.  He doesn't feel the need to do the MRI next week and we can go ahead with surgery on the 18th.  Of course, this is all subject to change once he reads the reports from KC (which due to a mis communication between dr,'s offices and then a down fax we couldn't get before yesterday..grrr).   The long seizures aren't as dangerous in this type of epilepsy as in others which was also reassuring.  He explained to us typically what to expect if he went into a seizure while awake or after just waking up (as they are usually brought on by sleep) so that also gave us some things to watch for.    Although the article says typically these seizures don't run in families he said current research is showing how this is a very inherited epilepsy.  I think I mentioned how in my research I read how anti-seizure medicines if taken while pregnant can cause cleft palate birth defects which he said is true...so, his birth mom very well could have epilepsy...we will never  know...

Hudson was so upset yesterday before we left when I told him where we were going.  "I don't like dr.'s anymore" he would cry and kept saying "will he lay me down and put things on my head?"...referring to the EEG, again this was SO traumatizing for him.  Well, Dr. Elterman was GREAT with Hudson and had him running in the hallway, throwing balls, etc. (all part of the exam) but Hudson thought he was lots of fun and kept saying "what are we going to do next?"..THANK YOU for instilling his faith back in Dr.s again before the 18th!!!!   Once he got home he went straight to work:

Again, thank you family and friends for all your prayers and thoughts....we have felt very at peace through all of this and know it is because of prayers and His Grace and Mercy!!!

wordless wednesday

Dr. Appt.'s Scheduled

Yesterday we were able to see our pediatrician. Hudson checked out great and they began to move forward in getting us seen in Dallas. Friday we will see a neurologist and next Tuesday Hudson will have his MRI. We are very grateful to get both of these appointments so soon. I also talked with his craniofacial surgeon's office yesterday. They expect we will have to cancel his tonsillectomy unless his neurologist gives the ok...not sure they can do that before the 18th.

I am still getting questions about his seizure. He has not been sick, (not one day since he came home in April of 08), no fevers, he was not dehydrated (I asked this question in the ER), his last immunizations were in Sept. I got some EXCELLENT information from Cheri. After we chatted a few times I realized I used to follow her blog. LOVE that the blogging world connects us!! I imagine I will be asking her a lot more questions..THANKS Cheri!!!

The big kids went back to school today. Hudson and I were home all day and you would think I would have gotten to the piles of laundry..it has been nice to just hang out and play...

No reason to post the picture above...Kailee got a new camera for Christmas and decided to take pictures as we walked up my dads driveway....our TX expedition couldn't make it up with the fresh snow over the ice...it is hard to believe that a year ago we had moved to MN for the winter/spring to be with my mom. I have SOOO wanted to talk with her thru all of this...

Thanks again for your prayers!!! Hudson is doing great!

First day of 2010

Today was a very nice uneventful day....we arrived home with no more episodes about 10:30 last night. The girls made it to their NY Eve's event just before midnight and were home by 7:30 this morning and slept until late this afternoon. Hudson was thrilled to be home and played all day with his Christmas presents, a very content little boy. We started him on his medication yesterday and have noticed such wild behavior. I don't know if this is from the RX or what but he is bouncing off the walls. For instance he was attempting to run on our dining room table which is six feet long...of course I stopped him immediately. He is LOUD and crazy but very happy.

I decided to call a friend of ours tonight. He is neurologist and did my neck fusion a couple years ago. After having 24 hours to "think" about all we were told we had some questions and since it is the weekend we hated to go until Monday without some better understanding.

First, to correct some info from yesterday...I was wrong to say focal seizures are less common or more dangerous than generalized. Basically, what it means is focal seizures are in one area of the brain so only certain things are affected..like a limb twitching or not being able to talk but the person doesn't lose consciousness. Generalized is when the whole brain is affected and this would have been what he had since he was unresponsive. The confusion came because we were told of the abnormality that was seen by the EEG of his right occipital lobe. The seizure started there but then spread to his entire brain...or that is what we think. His seizure was so dangerous because of the length, which is very unusual. The MRI will be done to give a detailed picture of his brain, hoping to find out what the abnormality is and why it is there, again, we may not know. Everything I read says they start with a long detailed history of his family....hmmm, guess we will get to skip that part...

Several people have asked me about night time and this was one reason I called our friend. Because he didn't show any outward signs such as twitching, jerking, making noise it causes us a little bit of "thought" as to what to do at night. Our friend said other than taking turns watching him there is not much we can do unless they set him up on monitors. He is sleeping with us and we are just praying for the Lord to waken us if anything happens. I am not going to be fearful and will ask the dr. this question next week.

The above picture was from Christmas Eve...Hudson is himself but the night in the hospital did something he hasn't done since first coming home from China. The first month or so he would fall asleep with his hands on each side of my face and sleep nose to nose with me. If I tried to move during the night he would, in his sleep, grab my face. He did this Wednesday night. He doesn't seem to remember much from the last couple days but has hugged my neck like in the picture above and said "I love you mama" probably 30 times today.

I appreciate all of you checking in and sending us your prayers, keep them coming. Of course, reading the internet can be a scary thing so we try to limit our knowledge to what the dr.s tell us.

Happy New Year to all of you!!!! I am excited for those of my blog friends who are traveling this year to bring home your children....what a treasure they are!!!!!