Monday, August 29, 2011

Last week in review:

Last week Logan had therapy on Tues...his PT and OT were once again concerned about his weakness and endurance. I am also concerned, but I cannot dwell on this... I know the tests are being performed that need to be performed and I cannot make myself sick with worry. I just can't.

He has slept a lot this past week. Yesterday he didn't want to get up to go to church...we just ended up at Sunday school and went to the late service.

Dr. Kahn's office called me just as I was about to call them and told me that Logan's test result's have all come in and we have an appointment on Thursday afternoon. Please pray for us! I am kind of anxious. I don't know...if they don't see anything we have to go to Indy to a specialist, but if she finds something they will treat here in Fort Wayne (I think this is what she said).

Thursday morning we also have Pre-K testing and have a speech eval, PT eval, and PT eval all through FWCS. This will help us to know what his "needs" will be...and he will be able to receive homeschool this way.

Another opportunity that I am pondering is something called "Restored to Glory" dance ministry for Logan. The lady called me this afternoon and informed me they have an opening for Logan. I had applied last year for him, but they were full. It is a 9 month commitment. I think he will LOVE it, but I think I am going to "sleep on it" before I decide. I know we will be doing swimming this fall and possibly soccer...

Gonna go do some thinking/praying...


Friday, August 19, 2011

Busy as a bee...

Today has been a BUSY day! Right off the bat we had an Echocardiogram scheduled for Logan at 8:45 this morning... He was VERY GOOD for this and laid still! :) After that appointment we headed to the pediatrician because we had to pick up the records to take with us down to Indy for Hailey's appointment. I decided to make an appointment for Logan and Emily because both of them were under the weather (Logan sinuses and Emily stomach) and being that I already had to go there and it is Friday...It was necessary. Logan has a sinus infection and Emily has a UTI and sinus infection. Gosh - Can't any of my babies just catch a small break?! As we were leaving the pediatrician's office I had an "oops!" moment...I had forgotten to get Hailey's wheelchair prescription from Ortho Northeast. So we picked that paperwork up and then headed over and picked up the wheelchair... As I was on my way home I remembered that I needed to drop off the kiddos antibiotic scripts to be filled. DONE!

That was our busy, crazy, productive morning! I am hoping that I didn't forget anything. :)

Neil works ALL it will be just the kiddos and I hanging out! Going to catch up on some of this dreaded housework that is never-ending!

Love to all!


Sunday, August 14, 2011

A bit overwhelmed!

I know that this is Logan's blog...but I am taking a moment to fill you in on MY life at the moment. I am 100% stressed. I don't know that I have ever felt so under pressure in my life. I know that God doesn't give us any more than we can handle and I continue to remind myself this every single time I look at my calendar. Just a little bit ago, I had to fill in MORE slots in my already booked calendar. It literally made me cry! I am stretched so thin, it's crazy! (P.S. if you are thinking I am on Facebook all of the time...I have it on my phone and my phone goes with me and FB is my outlet!). I know all too well I am a STRONG individual and that this will all be water under the bridge someday, but for the time being I am simply overwhelmed (but I will make it). Adapt and overcome...that's my motto.

Last night I went and donated my time to my lovely sister...I helped her get her house in order. She is having another baby all too soon, and I wanted to give her a hand and help her catch up. I know how life gets crazy and every now and then we all need a little help. I honestly LOVE helping my family. Helping others is my's just what I love doing. However, while cleaning, chatting, and little Gracie Girl goes to stand up from a sitting position and SNAP! went her ankle. Tears were flowing and I know from her previous 2 breaks what a broken ankle her broken ankle looks like. I knew right away it was broken, but just couldn't believe that all it took was standing up. I am still shaking my head over that. Hmmm. Off to the E.R. we went!

I (we) did receive good news this week from the neurologist about Emily. Her medication is working, her 48 hour EEG looked great, and we don't have to go back for 6 months! :) This was a great blessing considering everything Emily has been though with her heart and epilepsy! Now we have to go and see the ortho doc for her in Indy...and get her on the right track...thus preventing problems such as back pain, hip pain, etc. when she gets older!

Logan has numerous (it feels like hundreds) of appointments coming up soon, too. I still think we are on the right track and that this will hopefully all fall into place around us.

So I have 3 children all with non-related medical issues at the moment. I am just thankful that I am able to stay at home with our children. I am certain that if I would have had a job, I would have been replaced!

Well...I need to get caught up on these MOUTAINS of laundry! I am so LUCKY to have a wonderful, supporting, and HELPFUL husband! :)

Friday, August 12, 2011

Neurology Appointment:

Today we met with Dr. Kahn. Neil had to work so I had my mother-in-law go for the added support and an extra set of ears. Dr. Kahn evaluated Logan and going by his history...she doesn't think he is regressing as much as it seems to our PT, but rather he has had these problems all along and they are just presenting differently. His muscles are tired. Everything that she read/heard from us she feels that it is probably a genetic disorder and that he has had "it" since birth. This would explain the army crawling, the delayed walking, drooling, and the delay in speech. We don't really know any more today than when we went in (which I knew...bc she has to do all of the tests...). However, I got a really good feeling from her, and I don't think that this will be a dead end.

She ordered lab work (to look at some more genetic things), 3 different heart tests (bc it is all muscle problems we are seeing and the heart is a muscle), MRI of the brain, MRI of the cervical spine, MRI of the lumbar spine, and an MRI of the thoratic spine. She also wants to check him for a condition called myotonic dystrophy. I have no clue what that is... On a better note she did NOT feel that it is muscular dystrophy. That is GREAT news. She also did not think that the "tethered spinal cord" wasn't fitting either...he wouldn't have arm weakness and drooling with that. I think doctors and therapists shouldn't give out possible only makes the parent a nervous wreck and worry even more!

Dr. Kahn did say that if these tests are inconclusive, we will be heading to Riley Hospital to meet with Dr. Walsh who is a pediatric neurologist who specializes in neurogenetics. He would then perform a muscle biopsy. I am hoping we don't have to go that route and that we can receive a simple explanation. I guess we will see!

So today we begin yet another journey in hopes of finding an answer!

Wednesday, August 10, 2011

P.T. Update 8/9/11

I was hoping that Logans PT status would be at about the same as we were last week...because honestly...I don't see the changes that are happening right away because I spend every waking moment with him. Occasionally I will think..."man, he used to be able to do this." or "I thought last time that he did the treadmill he lasted longer." but as far as really *noticing* changes weekly it is so subtle to me that unless it is pointed out, I cannot really tell. I hope and pray that doesn't make me sound like a bad mother...I love this little boy more than anything (except the girls...I really love all my babies just as much as eachother!). Anyhow - what I am trying to get at is that I think/hope/pray all week that "next week" there will be a positive change. You can only go downhill so long before things start to improve...right?!?!

This week Logan's therapist noted that his scapulas are beginning to "wing" (this means that his shoulder blades are protruding from his back because the muscles are not doing their job of holding them in place), his right scapula is worse than his left, his stamina on the treadmill was significantly lower (which I kind of expected because he is just so exhausted), his core muscles are weakening, and the tremor was much worse this week than it was last week. The P.T. was extremely glad we were able to get into the neurologist so fast (this Friday)...she is actually going to type up a letter for me to give to the doctor specifically so that I won't forget anything. She is also faxing all of the weekly reports that she does...but she is very concerned with making sure the doctor does a full in depth evaluation. This makes me feel a little better...

Logan's behavior has been rotten for over a month now. I hate "reporting" that...but it is the truth. The P.T. and I think it is a combination of feeling so crappy, not getting a full nights sleep, and just experiencing all of the changes so fast and he doesn't understand what is going on. It breaks my heart, but at the same time I am so stressed out that the tantrums only add to the stress. I can't even imagine what he is going through. I wish that I could take it away and he could just relax. He can't sit down and have a glass of wine and a bubble bath and forget his troubles (for the time being) like I can. :(

I have been trying to remain strict with the discipline bc he is so smart that if I budge even a little, he will catch on and take full advantage. He did lose his t.v. (the documentaries that he watches every single night) a few nights ago bc he refused to get in his bed. I had to be the bad guy and turn it off...but you know what?! That next night he went to bed without hassle.

If you pray -- please pray that we are doing the right thing -- making the right choices in the doctors we choose to take care of our Logan. Also pray for the doctors patience & intelligence -- this obviously isn't an easy or typical case. Pray for Neil and I that we maintain our patience with the children and the doctor's. Also for our girls -- Emily and Hailey -- to know our love for them is infinite. I am so afraid that they might think Logan has become more of a priority. Each child is very special to Neil and I. Most of all -- Pray for Logan's body -- that it may receive complete healing.

Thank you all so much -- and I will keep updating as I can!


Sunday, August 7, 2011

Missing My Boy

Tonight Logan went to spend the night with his Grandma Cheryl. I know they will have a fantastic time together and he will love every minute...especially the one-on-one time with his grandma. This seems great, and it is, but... I miss him SO MUCH!

I am so used to the girls coming and going to sleepovers with the grandparents and cousins, but Logan is always my little bed-buggy. Let me define "bed-buggy": an awesome little cuddler that will keep daddy's spot warm, give lots of snuggles, and say adorable things that turn a bad day good. Logan created this term...we always say "good night, sleep tight, don't let the bed bugs bite." One night he said (because Neil had to work a 24 hr at the hospital) that he would be my bed-buggy and I wouldn't have to sleep all by myself. :) He is such a sweet boy. Always lookin out for his momma. :)

I honestly cannot remember the last time that he stayed anywhere without me over night. I know this will be a good night for him and he will probably make some pretty sweet memories staying with grandma. I just miss his goodnight cuddles!

On another note I have a precious story from church this morning: Today was the kids VBS finale during the worship service...they were performing the songs that they had learned during the week. As Logan was singing and dancing he stopped in the middle of a song and came and sat back down with me. I asked him why he didn't want to stay up there and sing and he told me that his legs were hurting too bad. As the service was coming to a wrap Pastor Maki asked if anyone had any Pastor was asking different people their prayer needs for the week Logan's little hand shot up in the air. Pastor called on Logan and asked what his prayer was...Logan then asked if he could pray that his legs would stop hurting. Pastor asked everyone to pray for Logan's legs and the doctors that are helping him. It was kind of a long prayer, but Logan sat completely still during the entire prayer. He was praying too. I cried like a baby. After that prayer, Logan laid his head in my lap and went to sleep. He is such a sweet, loving, and caring boy. I just pray that everything will turn out okay! I know it is in God's hands. :)

Hope you have a wonderful week!


Friday, August 5, 2011

Summer So Far...

We have yet to do our Gulf Shores vacation, and with all these doctors appointments, I think it is going to be post-poned until winter! However, I believe that this has been a very memorable summer for Logan. There have been quite a bit of *firsts*.

This was the FIRST time ever that Logan visited an amusement park...we took a mini-vacation to Holiday World (where I used to go EVERY.SINGLE.SUMMER as a child).
He had a blast! His favorite part was the "Wildebeest" which is their new water-rollercoaster! He is so brave! He also LOVED watching the dive show. I am pretty sure when he gets older he is going to live by the ocean so he can work/play in it 24/7!
It was SO HOT there, but with the drink stations (that are FREE) set up all over the place, we were ALWAYS hydrated!

Another FIRST that Logan got to do was meet my Grandma Wright...his great grandma for the first time! We went down to Evansville to celebrate her 90th birthday! I just pray that I will be as amazing as she is when I turn 90 (if I make it that long! Ha!).
On our way home Logan was exhausted...we went through a horrible storm with wind, rain, and awful lightening and he slept through ALL of it!
Then it was 4th of July (my FAVORITE holiday!) and we did Chinese Lantern's for the FIRST time...Logan loved it! It was pretty neat if I do say so myself!
He had fun with the snap-pop things and LOTS of sparklers (and you KNOW I was right there making sure nobody was getting burned or careless!).
We actually met some friends of ours in Huntington this year. The fireworks were so much better there than in Fort Wayne! The show lasted 40 mins as opposed to our 15 min max here in FW!
Logan has also spent A LOT of time at the ballpark with us...His big sister Emily is playing baseball for the first time this year...and although it has been H-O-T, it has been SO MUCH FUN!

We also watched the space shuttle launch and return for the last time...and he was SO into it. I love that my boy LOVES history,and also learning how and why things work, etc!

Then we ALL got sick...FOR A WEEK STRAIGHT. Logan ended up with double ear infections, bronchitis, and a sinus infection ALL AT ONCE. It was horrible and I cannot remember the last time that we were hit with something this nasty! He literally slept 3 days straight! glad we are all better!
While sick, we had to sit in the hospital for 48 hours straight with Emily to have her 48 hour EEG. This was to make sure she is seizure-free and the meds are doing their job! It was amazing bc they all slept A LOT, and had Logan been healthy, I am not sure if either one of us would have survived 48 hours straight in a tiny hospital room. Ha! :D

We have had lots of playdates with the cousins...recently Logan decided that Nayomie needed to play with play-doh! It was so cute! They all played so sweetly together (even if she did eat a little!).

We also took a spur of the moment trip to the airport to watch the airplanes take-off and land. The kids love this! It was sooooo HOT! But completely worth the joy on their faces when one flew right over them! We did timed relay races in the meantime while waiting. There is never a dull moment!

We attended the Zoo's "Member's Only Picnic." We walked through the zoo and it was so hot there that even the alligator was in his pool, which we have never seen...he is usually out sunbathing!

Icy - The Fort Wayne Komet's Hockey mascot was also there!
Honestly...our summer has been fun and full of adventure! I think this is my first summer since I have been a stay at home mom and been able to FULLY ENJOY all that life with my kiddos has to offer! I am so blessed and love each one of them so, so, so much!

With all of the health issues between Logan and Emily -- I am so glad that I decided to be a stay at home mom. Even though our summer has been packed with doctor's appointments, therapy appointments, and specialists...we have still managed to enjoy eachothers company!

Hope you all are having a great week!


P.S. Logan goes to see the Neurologist on the 12th... I know we won't know anything on that exact day, but it's getting closer!
"God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it."

Tuesday, August 2, 2011

Another possibility?!

Today we met with Logan's pediatrician regarding the symptoms that the PT, OT, and we as a family are noticing with Logan... This includes: hamstings getting tighter, balance being off, having accidents, muscle weakness, pain in his arms, tremors, etc. After doing some research this week (because last week I was told that it could be muscular dystrophy) I was wondering if this could be related to his medications. I started looking up the side effects and sure enough muscle weakness, fatigue, and tremor were all listed as "uncommon side effects."

I put a call into his PT to see what she thought I should do...because she is the one that has physically observed ALL of these symptoms, besides Neil and I. She suggested that I make him an appointment and she would send her observations his way.

Today we had our appointment and Dr. T said that he doesn't think that it is a side effect of his medication, or for sure Muscular Dystrophy, but that it could possibly be Tethered Spinal Cord Syndrome. If you click on the link you can read more about it. Dr. T is setting up an MRI and a consult with a neurologist for Logan here in the near future.

This sounds bad... but my thought is that IF it has to be anything...I could probably handle this. A positive about this type of disorder is that this can be surgically corrected...unlike Muscular Dystrophy (in which he would struggle with it for the rest of his life -- possibly shortening his life span).

There are a couple of things that it doesn't explain (where the MD seems more "fitting")...that would be the drooling we still have and the muscle weakness in the arms.

I guess I will just wait and see what our neurology consult brings... These up's and down's are crazy!

Until next time...