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Tuesday, June 30, 2009

I have the blah's

I am having one of those days - where I ask myself - why us? I have been trying to stay positive the whole time while I am away from family - but today I am a bit down -

I watch Brextin during therapy and just wish my son didn't have to be taught how to catch himself as he tips over, or how to roll over, or how to reach for an item mid-line, etc - It all has just got me down today - so I am actually away from him right now so I can have some alone time - it is very sad not knowing the outcome of our son - will he be able to walk alone, will he be able to feed himself, will he ever reach out for me for a hug or comfort - a ton of questions of the unknown start to pop in my mind and it all becomes over whelming.

Both dives went well today - I did find the courage to ask the hyperbaric center - why were being charged $1500 more than 4 other families that I have talked to at the center - and their defense was that additional grants are provided for families that are from different cities, countries, states, diagnoses, etc - blah blah blah - however, I have learned a valuable lesson - it does pay to look around for best deal when it comes to receiving oxygen therapy - I strongly feel the reason why I am being billed more is that I decided to receive OT, ST, and PT therapy at the center in which they are suing for leaving their building abruptly. I myself have been VERY pleased with Communication Innovations for providing therapy to Brextin - and currently the oxygen center is not even offering therapy services - so I am for sure glad that I did seek out the other therapy center. I have been very pleased!

During our vacation with my parents and my husband - not one member mentioned any significant improvements - I do think he has become more verbal - lately he is having troubles eating which is also making me depressed - it has been taking me over 1 hour to feed him 7 ounces of liquid and one jar of baby food - he keeps moving his head side to side and often spitting it out at me - (I think this is because he is exploring his tongue) whatever it is - it is making my blood bubble!

I even tried water instead of his rice milk - all he does is pool the liquid in his mouth and then it slowly seeps out the sides - why why why - I just wish I could get him to open his mouth and swallow without any problems -

The rep from Ottobach (he is who we got Brextin's wheelchair from) was here today to show us some gait trainers (currently we have Elijah's) and he will be bringing some attachments so we can try to get Brex to walk - here is their website we have tried a sling seat (since it is tough to get him to stand) - but he relies on the seat to often - and all he wants to do is bounce - so we are looking into hip supports instead.

My cousin Andrea just called and we plan on connecting tomorrow night for dinner - which will be nice to actually have a night out - and not have a frozen dinner.

I am glad that I was able to update his blog right now - so when I do get him in a couple of minutes - I can actually relax and not update the blog - sometimes I can be on the computer for 2 hours after I get home and the time slips away. I better get going to pick up the little guy -

Please continue to pray for success and strength for both of us.

Monday, June 29, 2009

Brextin splashing and having fun!

Brextin walking in gait trainer

This is a video of Brextin walking in a gait trainer - there was a therapist holding his hands onto the gait trainer and another one behind him - to make sure he didn't lean his butt up against the gaint trainer - I was very proud of him today - there were a lot of people cheering him on today!

Video of Brextin chewing.

This video shows Brextin chewing and getting familiar with his tongue and lips - he has begun to suck his fingers and create a clicking sound with his tongue.

A wonderful weekend and Monday!

Grandma and Brextin
Brayden pushing Brextin

Hives on Brextin's foot

Brother's how sweet!

What a wonderful weekend - it was nice to escape with my husband and oldest son along with my parents to the Dells - I will try to post some pictures later tonight - I am updating the blog from Brextin's therapy center - and do not have the correct cables along -
Nothing surprises me anymore - we very seldom get to enjoy a relaxing event without something occurring with our little angel - Brextin - we have no idea - if it was the heat or the chlorine but his legs broke out with hives - He has swam in other public pools - but maybe the Wilderness has a Very high level of chlorine - plus his body is unable to sweat - due to the seizure med - called toppamax.
This is what it says on the Internet - One of the drug's side effects is inadequate sweating -Some children who take Topamax may not sweat enough in hot weather, causing their body temperatures to rise, sometimes to dangerous levels. Children should be monitored in hot weather to be sure they sweat appropriately. or

Today was a fantastic day! I will attach a video of Brextin walking with a walker - he was actually taking steps and he walked back and forth in the therapy room - it was amazing - he also was balancing himself on the dizzy disk really well as well. Plus one of his therapist used a flashlight to shine on a book and his eyes followed the flashlight to the different pages - it was really nice to hear about these improvements - We are currently have finished 26 dives -

I am wondering if I can do a photo album - if not I will post a couple of photos in a couple different posts -

Keep the prayers coming - I sure do appreciate all of the letters along with the prayers that have been sent - my cousin has been forwarding the mail onto me - feel free to leave a comment on his blog as well - I have changed it now that you do not need to be a register user.

Friday, June 26, 2009

Things are going GREAT!

We had another wonderful day - he is currently sleeping during his OT therapy session - I left him at the center while I ran to the hotel to load the van up with our suitcases so we can head to the Dells right after his speech session which ends at 6:00 -

I just talked to Andy and they left the road about 30 minutes ago so they should beat me to the hotel - I am getting very excited - I sure hope the weather is better than what is expected.

I took some video this morning of him chewing a cookie - but the camera is at the center - so I will post it when I get back - he is getting really good and moving the food around and clearing his mouth.

Thursday, June 25, 2009

Another wonderful day!

We had another wonderful day - except that he woke up at 5:20 instead of 6:00 - so his naps were a little off - but we had no seizures - which is always great -

I am getting excited for our Dell's trip - except for the chance of severe storms approaching all day this Saturday - however on Sunday it appears to be better weather -

My husband plans on driving down on Friday to the Dells and I will meet up with them when his last therapy session ends which is 6:30 - so we should arrive in the Dells around 7:30 or 8:00 - I am even more excited that I won't be eating any more frozen food - for the next few days -

My parents will be driving down as well - as soon as my dad gets off of work - they are coming down to help watch Brextin while I am able to spend some time with his older brother.

Tonight I am so lucky enough to have a Boston Market - Salisbury Steak / macaroni and cheese dinner - (they are actually pretty good) and for lunch I enjoyed a frozen Marie Callender's Al Dente Pasta - Tortellini Romano - I sure wish it was a REAL steak!

Today Brextin had a corn chip during speech - he even took a bite - it was really cute - he had good lip closure. Plus his physical therapist said he took some steps on his own on the treadmill. It all begins with the little steps. He is currently laying on the floor just talking away - he sure does babble - I plan on eating and then maybe taking him down to the pool - or I might just chill in the room tonight - since we will be in the water a lot over the weekend.

Wednesday, June 24, 2009

More photos from today's sessions

Here he is working on balance.
Here he is working on pushing with his hands.

Here he is working on catching himself with his hands when he is rolled forward - he was doing a great job at placing his hands out in front - and then stopped knowing we wouldn't let him fall.

Brextin swimming this is the website in which we purchased the neck ring from - he has worn one in the tub since he was at least one years old- it allows him to be in the tub with big brother - it has been wonderful! He can sit up - but not in the tub - the water makes him to unstable - and he just tips over.

Gee do you think we might get a couple of looks at the Dells? The ring allow him to move his arms and legs - he sure gets a work out in.

What a wonderful DAY!!

We had two great dives no seizures and he worked very hard today at therapy. He even napped when he was suppose to. It has been a struggle to allow time for him to have oxygen dives, eat, sleep, and do therapy all in a day period - but today was great!! It is 7:00 right now and I plan on taking him down to the pool for some water therapy - I will bring my camera down and if he is really active with his neck ring on - I will take a little video and post it tonight as well -

I am getting very anxious for another frozen dinner - hmm let me see - do I want frozen chicken, or frozen Salisbury steak - hmm tough call - I guess it beats what Brextin has to eat - gotta go and get my suit on!

We did swim last night as well - I couldn't figure out why we were the only ones swimming in a heated pool - maybe it was because it was over 90 degrees outside - ooh well their loss. Brextin even made waves!

Tuesday, June 23, 2009

Video of him getting in 4 point.

Brextin has been tipping over while sitting (this is because he has begun to push with his hands on the floor and rock back and forth but he doesn't realize he is so strong that he pushes himself right over)- and I have been doing my best and not catching him - which is hard - since I don't really want him to tip over - but it has been interesting in seeing what he does as he tips over - the therapist are working on teaching him how to balance and catch himself. This is a video of him as he just tipped over - you can see he is getting himself into 4 point - he actually even scoots forward - kinda crawling - it is pretty exciting to see him do this.

More seizures :-(

Today was not a good day - he had 3 small seizures while in the chambers - we also had a follow up appointment with Dr. VanDyke and he mentioned it is not uncommon to have an increase in seizures in the beginning - however they should be occurring less as the dives continue. There are a total of 40 dives and we are now half-way done - we did our 20th dive today.

We also will be trying some more supplements - Andy is not keen on the supplements but again I will try anything - the Dr. suggested Vitamin C, a probiotic, taurine, and one other one that I can not recall - I don't plan on introducing them while doing the Oxygen treatments - If I do start any of them - it will be the vitamin C - he thinks it might help with his stools.

I am still working it out with his other therapy center - they have given me a number to call to begin the paper work to fight the denied claims from the state - our current insurance company only allows 40 sessions a year for OT, PT, and ST - which is less than one time a week for the full year and so there are about 12 sessions that were not covered by insurance -

To make things even more confusing our district will be switching insurance carriers as of July 1st and I am trying to figure out how many sessions they will cover -

Today Brextin was very very tired - the seizures could have worn him out - or maybe the weather did it to him (it got to 98 here in Madison) - or maybe he is just worn out from all of the appointments - but today during speech he was not his talkative self - but he did find sometime to enjoy a little bouncing - I will post a video of him bouncing - the toughest part is getting him to only stand and not bounce - since he loves to bounce so much -

We just got home from therapy and it is 7:11 he is crashed out on top of my bed - I need to wake him up for seizure meds and feed him one last time - we might try to get into the pool tonight - but I still need to eat as well -

Last night Rebecca and Eliza wanted to get together - but the night just isn't long enough for us to do everything - I could really use a little R&R in the hot tub - but by the time we eat dinner, update this blog, and provide baths - it is around 8:30 or 9:00 - and our day then begins all over again around 6:00 am.

I am so glad that I went forward with the hotel room - it has been nice - I have came up here a couple of times to eat my frozen dinner while Brextin is at therapy - since it is just 1/2 block away I even get in a little walk - the only downside is that I need to pack up everything this Thursday night and then unpack it for our Dells get away - I am so looking forward to the Dells - so far the weather report states rain on Saturday and sun on Sunday - however it is still a long ways away and I am hoping for nice weather - however a little cooler than 100 would be an asset.

Monday, June 22, 2009

More photos - way to go little guy!

Going Good!

We had two wonderful dives today - Brextin did have a mini-seizure lasting about 10 seconds during the first dive - but other than that he was a good day - he had been working real hard in therapy. I will add pictures today as well.

Brextin is working on getting his hand to the side to catch himself, standing without bouncing, and rolling over to his belly, even yoga - the speech therapist said he had the best session ever - his tongue is getting out further and he is clicking his tongue to the top of his mouth - he is taking turns making sounds - he has even chewed up tiny bits of cookie - way to go Brextin!

Everything is going well here in Madison - unlike at home -When I was home for the weekend I opened up a letter indicting that MA denied a bill that was sent to them from our therapy center which is located 60 miles away from our home - we seek out additional therapy for our son - because I strongly feel he is advancing because of the double therapy sessions (our neuro has written out a script seeking therapy 3 times a week) - he is seen by our birth to three team as well at a center which is located 60 miles away - however I just received a notice that we have been denied for OT sessions at the center 60 miles away and that we were denied because MA won't pay for two separate services - The letter states we were denied because the center was to perform a prior authorized letter - which was never done - and now that they have provided services they would like to be paid.

I have 45 days to write a letter to appeal their report - I have no idea what should be written - the center has always billed our insurance company and so I didn't think that they would bill MA as well - since Birth to three does not bill our insurance company and only MA. The letter was dated June 9th and since I am away from home and am located 3 hours away - I have no idea how I am going to be able to fight this - as if I don't already have my plate full -

Why is it that things are made so complicated - I just want to do the best that I can for my son but why is it that I have to be put through the ringer to do so!

I don't even attend the sessions at the center located 60 miles away since I work full-time (so I am unsure as to what is being performed - to really fight the appeal) - (it would be nice if they sent home a letter indicating what was being worked on (our birth to three does this) - sometimes I get an email indicating what was performed- or if he had a good/bad session but usually only one of the three therapist is consistent) I am so fortunate that my mom takes him back and forth while I am at work - I really value their work at the center and really like them as therapist - but am not interested in paying an additional $8,000 for OT and PT when it should have gotten a prior authorization! If I had any idea that their services would cost me in addition to our insurance then I would have dropped services and done the work myself! Why didn't it cost me extra before we had MA - hmmm -

We have been going to the additional center since Brextin was 1 years old - so we have been clients for over one year - I was looking forward to going back there when we are done here in Madison - but that won't be occurring if I have to pay additional money.

I am just very upset - my husband tells me - slow down - everything will be ok - ok - is he sure - he doesn't have to write the letter of appeal - he doesn't attend any of his therapy sessions - he doesn't know anything about his therapy - not even their names - IIIRRK ! I am really irked right now!

I need to take a break - I will post tomorrow when I am a little more relaxed -

ooh ya - plus we are up for his ISFP meeting when we get back and strongly feel as if vision therapy is needed and our local birth to three doesn't offer vision - so now I am stuggling to find who can perform the services that are needed to enhance my son's life!

It is one thing after another!

Friday, June 19, 2009

More photos

In a couple of the pictures you can see how exhausted he is getting from his busy schedule - but it will pay off in the days to come. He is most happy when he is able to lay back and grab those toes - or I should say socks!

Here are some photos from therapy.

The picture of the little girl is Eliza - this is the daughter of Rebecca who I met through the Micro list serve from yahoo.

Brextin had another seizure!

We had a terrible night last night - there was a tornado that was spotted about 6 miles from where we were staying - so we were in the basement around 2:00 this morning and the storm was heading South toward Jansville. We came up stairs around 3:30 - then I got up extra early so I could pack up the van for our adventure home to visit big brother and daddy!! I promised my cousin that I would continue to visit while we are here - we very seldom get to see each other.

This mornings oxygen dive was good - we even got our picture taken by the oxygen center - they plan on updating their brochures. Then afterwards I changed his diaper and he ended up having a seizure on the changing table - it lasted about 1 minute - and he quickly zonked out afterwards - he has been able to sleep for about 2 hours and we are attempting PT - right now - however he is very very sleepy - but he is trying his hardest - he sure is a strong little boy.

Last night we were practicing on rolling over and over - and when he was placed on his belly he got into 4 point all by himself!! 4 point is when you pull your knees up under your chest and raise up on your hands while lifting your head. I was ecstatic - he even did some rocking - I must admit - I am glad we are heading home to visit family even though it is only for a short period of time - when I am alone with him for such a long period of time - I get thinking about his future and so much is unknown that it scares me and I just break down - people say it will get easier as time goes on - but personally it has been really really tough!!

Brextin is currently doing some yoga moves- I will try to take some pictures so you can enjoy it as much as I am. He is getting his tongue out further and further each day - that is a positive for possibly sounds in the days to come.

Thursday, June 18, 2009

Another great day!

Last night I began to pack up - tonight I will be filling up the van - so after therapy is done tomorrow - we will be heading home to share some time with the rest of the family - I sure do miss them!

Then on Sunday I will be checking into a hotel that is located about 1/2 block from his therapy center called Communication Innovations. I am not looking forward to unpacking and then packing up again - but the following Friday our family will be staying in the Dells - and there is no sense of paying for a hotel room when we won't be staying there - but then after the Dells I will be staying put at the same hotel.

Brextin has been working very very hard at therapy - the center has requested that I bring his gait trainer that we have at home back with me - it was the one that was loaned to us from Elijah - I am praying it will be the "traveling gait trainer"meaning that we will be able to return it back to them as soon as he begins to walk - there hasn't been a huge improvement in his walking skills - but I need to stay positive - he is able to lift and move his foot forward which is a step.

I do believe Brextin has been more vocal as we are doing the oxygen treatments and the speech therapists here at the center are working on moving his tongue around for exploration - he is able to lift his tongue to touch the top of his front teeth and can even make a clicking sound.

I just need to laugh when I see our little guy - he can be wide awake one minute and sleepy the next - I think he tends to play possum - luckily the therapists haven't been playing his game and they do as much as they can to stimulate him -

While Brextin is at the therapy center they are working on body strength in the arms, legs, and in the middle - along with speech. They often have him flying in the cage, side sitting, practicing prone position, walking with a gait trainer, and of course jumping. Jumping will usually wake him up - he LOVES to bounce.

He went to bed last night around 10 and I had to wake him up this morning around 6:00 - he even stayed awake this morning during the first dive and fell asleep right afterwards - I even had a moment to check out the garden center that is located next store - it was nice to find a little of "me" time. When I placed him in the pack and play last night he was laying on his side - but when I got him up this morning he had moved - I haven't figured out how he got to the position he was in - but he was on his back and turned by at least a 45 degree angle -

I am in the process of finding an umbrella stroller that can recline - the current stroller that I am using is from a thrift sale and it doesn't recline and it doesn't allow him to sit up straight - it allows him to slouch and it is tough to feed him in - I have been using it as a high chair - I decided on not bringing his wheel chair because it is so big and way to HEAVY to be bring in and out - for short trips. Here is a link to his current wheel chair.

Wednesday, June 17, 2009

A wonderful drive and today!

I left this morning at 7:00 and got to the center at 7:35 - there was absolutely no slowness on the highway - it was a great commute!

Brextin of course slept as soon as he hit the road and he even slept through the dive - and now we are at therapy and he is again getting sleepy eyes - our little guy is getting very worn down.-

I met a wonderful gal from Honduras - she is a spanish teacher in Milwaukee, WI and her sister's son is receiving oxygen therapy hoping it will help with his speech and autism - it is nice to have others to talk to while at the HBO center. We ended up discussing the cost of the dives- and she was quoted $4500 for 40 dives and a month of hotel stays - but since she would be commutting back and forth and not using the hotel stays - it would only cost $3,000 -

So let me get this straight - I to do not currently have the hotel stay - but I am paying $4,000 why are we all not paying the same price- it just isn't fair - they were told it was because it was off season peak - but I believe we are in the peak season right now - hmmm Life is to short to wonder why. I would think the center would figure out that people do talk with each other and ask certain questions -

I am typing this during his therapy session and he is fighting and I mean fighting to stay awake - in 30 minutes we head out again to do another oxygen dive -

I have typed this blog entry twice and it keeps not saving - hopefully if I remember anything from the past two times that I have attempted to type - I will add it later.

Tuesday, June 16, 2009

Power went out while in a dive - talk about scary!!

They are building a new building right next to the Hyperbaric Oxygen Therapy center and the big bulldozers must have hit a power line - talk about scary - for one thing - please keep in mind - when we are in a chamber - they are all steal - and the ONLY way that you can get out is if the person on the outside allows you out - the only communication that can take place is the two-way radio that you are provided with as you begin your dive -

At first I couldn't even find the two way radio - so my heart was racing - plus to top it off - Brextin decided to take a nap so I had him laying on my lap -so I had to slide him over so I could reach and locate the radio - David mentioned to me that the power went off and that he needed to bring me up from the dive and then take me back down - and there was nothing to worry about -
It is heart wrenching knowing that he is my lifeline to communication - plus there are other chambers that had other people in them as well - but he reassured me that there was nothing to worry about - boy it allowed me a moment to thank my blessings.


Another good dive. 9 dives have been completed.

We left at 6:45 this morning and arrived early this morning - remind you the reason why I leave early is to feed him at the center - but the little stinker fell asleep - luckily he woke up about 10 minutes before we entered the chambers - so he was able eat a jar of pears - then when we got out he was able to have his Reliv shake and another jar of baby food - it has been tough trying to feed him in-between the dives and all of the therapy along with the naps - so I am glade I have been able to feed him 2 jars already this morning -

It is currently 10:45 and he has a therapy appointment in 1 hour - he is suppose to be napping right now so he is well rested for his two hours of therapy - but since he snuck in a nap on the drive here - he is wide awake - I can only hope he will remain awake until his next dive, which is at 2:15.

We haven't seen any huge improvement yet - but we have only had 9 dives - I do think he has been kicking his legs more while in the stroller and in the tub. I'll add onto his blog after his second dive today. Keep praying!

Monday, June 15, 2009

Look Brextin is splashing!!

Usually when we place Brextin in the tub - he just lays there - but tonight he was kicking and splashing in the tub - not so much with his arms - but boy he sure did with his legs!! Way to go little guy!!

We will be moving into a hotel near by the therapy center.

I have not told my cousin yet - but will be moving to a hotel near the therapy center on Sunday -

The reason is that this morning was a challenge as was last week - there is construction on highway 14 and it is down to one lane - and with people wanting to get onto the highway from Oregon and Stroughton it can be a very long sit on the highway as everyone tries to merge - this morning I left at 7:00 thinking I would be able to get the HBO center early to feed Brextin however we didn't arrive until 5 minutes to 8:00 and David was ready for us at 8:00 so he didn't get to eat until we were done with his first dive -
I just don't want to risk missing an oxygen dive - and am not interested in leaving any earlier than 7:00 when our first dive isn't scheduled until 8:30.

However the ride home only took 25 minutes - that is because we leave therapy at 6:00 so we avoid the rush hour - the hotel in which we will be staying at is right down the road from the therapy center - we can actually walk there - plus - the gal that I met from the Internet is staying at the same hotel so it will be nice to connect with her again - and there is a grocery store right across the street, along with many restaurants and park less than one block away - I am very anxious to have everything in one location -

I am however, very thankful for my cousin to share her home with me and our son - they have wonderful hearts and am very touched that they allowed us to share their home with them -

The second dive today was again uneventful (this has been a blessing!!)- he is getting his tongue out more and more each and everyday - the naps have been a struggle (you can see in the photo above how tired he appears while working hard) - but lately the therapist have been rubbing his legs and his eyes just pop open - it has been amazing -

I am planning on driving home this weekend to spend sometime with my oldest son and to share Father's day with my husband - my guess is that he will escape to go fishing and allow me time with our two boys. So I won't be checking into the hotel until Sunday - However - I am not looking forward to the 3 hour drive and packing and unpacking and doing it all over and over and over again.

It seems confusing but since I haven't seen my oldest son for awhile - we will be having a family weekend in the Dells -my parents will be joining us as well - to help with Brextin - so I will actually check into the hotel this Sunday and stay for about 5 days and then check out - go to the Dells hotel and then head back to the hotel near the therapy center (however it won't be the same hotel room). The hotel room in which I will be staying in near Madison has a full kitchen, free Internet, free laundry downstairs, a DVD player, a heated pool, and a sitting area.

It is now 7:00 and I am finally going to go and sit down for a little while before I head to give Brextin a bath - aaahh one more day has been completed -

Keep the prayers coming!!

Brextin has a terriable cold!

It was an interesting night - Brextin was having troubles sleeping and so I pulled him into my bed to sleep with me- but all he did was kick and babble so around midnight I placed him back into his pack and play and shut the door - I have no idea what time he fell asleep - but he did not wake up at his normal 5:30 time - so I quickly jumped in the shower and woke him up around 6:00 -

Brextin hardly ever cries but this morning he had tears - something just wasn't right - when I tried to give him his meds he began to fight me - and it was quite odd - I was able to get his medicines and supplements in him - but then about 15 minutes later he threw up a gob of oozy stringy snot - but after he got the gob out of his throat he appeared to be better.

He slept through his first oxygen treatment and then received his CST therapy right afterwards - he is now rocking back and forth in my arms and is again getting tired which is wonderful since he is scheduled for speech in about 45 minutes. The therapist thinks the CST will help his cold.

Sunday, June 14, 2009

A swim date with Rebecca and Eliza

Yesterday - we headed into town around 1:30 to attend the open house activities at the WI HBO center but it was a little awkward - the center offered a ton of fun activities for the kids to do - however, since our son is unable to do any of those activities - I felt a little out of place - I did call up Rebecca (we meet through the list serve with micro kids from Yahoo) and she came around 2:30 - but I ended up inquiring about other services that were offered next store. Right next store to the HBO center is a business which offers CranioSacral Therapy (CST) - currently Brextin receives this at the Special Children Center in Hudson WI and as he gets his weekly massages as well - but since his current therapists down here do not offer it - I was glad to see that he would still be able to receive it -

The center just opened up and is well trained in working with young children and will eventually do the therapy while in the oxygen chambers which would be awesome - his is able to nap while this type of therapy is given so he is scheduled to be seen after his first dive tomorrow and plan on having at least one treatment a week - - if you were interested in learning more about CST you can read more about it at the link above.

After the open house - Brextin had Physical therapy for 2 hours - then we walked to the hotel to meet Rebecca and Eliza for a swim date - I am thinking about seeing how much it would be to stay in the hotel - I have already paid $40 in gas by going back and forth from Wednesday through Saturday so driving back and forth is adding up -

Rebecca's husband and oldest daughter came up last night to stay for a week - and we went for a quick swim before we left for the evening - Brextin was even moving his legs and arms a little while wearing his fashion neck ring.

Today - being Sunday - we are chilling because tomorrow begins a busy week - we are going to begin our first 5 day therapy week - since last week our first dive started on a Wednesday -

I believe we are going to try to use Skype again tonight so I am able to see the rest of my family - I love the fact that it is totally free!!

Keep the prayers coming!!

Saturday, June 13, 2009

Saturday morning - a day of rest :-)

Brextin decided to rise and shine at 5:30 this morning - but I stayed in bed and listened to him babble until 6:30.

Last night we ended up meeting Rebecca and Eliza - we visited them at their hotel room and it was really nice to connect with another parent who can relate to having a child with special needs - I didn't realize it but Eliza has already completed 80 other HBO dives someplace else other than the WI HBO center - Rebecca believes she has seen wonderful success so far and has decided to keep doing more dives.

Then we began to discuss how much each oxygen session was and about the deal to stay in the hotel for an extra $1,000 - little and behold - she is paying the same amount for the dives and only paying $450 more to stay in the hotel which offers a full kitchen (for the full 30 days) - I was told it would have been an extra $1,000 to stay in the hotel and that is why I searched out relatives to stay with ($1,000 is a ton of money - these days - and the decision was needed before we had the benefit) - I am forever grateful that I have wonderful relatives that are allowing me to stay - (I just don't like the fact that I feel as if I am imposing on their life for over 30 days - Brextin tends to make some loud screeching noises and when he bounces in his bouncer it tends to be quit loud) but if we would have stayed in the hotel (I wouldn't have displaced my cousin) - I wouldn't have the extra 60 minutes to commute (Plus the hotel is located right ACROSS the street from the intensive therapy center -I walked there tonight) and I would have been able to have Brextin and myself relax in their pool - sometime life is not fair as to why everyone is not treated equally - I booked in January and so did Rebecca - ooh well - I guess life goes on and I am forever grateful that we are seeking the oxygen dives for our son to hopefully benefit him - and have met a real nice friend to boot and so has Brextin.

He stayed awake last night for speech and the therapist said that he has good tongue movement and is hopeful she will be able to possibly get him to speak some new sounds before the intensive therapy sessions are done. Then came the second session of physical therapy and guess what he fell asleep again - but Lynn was able to get him to wake up with some cold water and he actually stayed up until we left the hotel around 8:00.

Friday, June 12, 2009

We experienced one tiny seizure

Brextin's nose was getting filled up and I wanted to make sure he was able to breath well today - so he used his Mr. Bubbles nublizer today before we left the house.

Today during the first dive - Brextin had a tiny seizure - it occurred while we were coming up from our dive - but the second dive today was uneventful.

Today's schedule so far has been working - we got up at 5:30 and hit the road around 7:00.

Our first dive isn't until 8:15 - but I have getting to the center early to feed Brextin there so I am not rushed and I can sit and watch the news as well. I consider it to be my 30 minute rest -

We then dove at 8:15 until 9:30 - and he soon fell asleep after the dive and so I stayed at the HBO center and was able to place Brextin on a therapy mat to nap - while he was napping I was able to socialize with a wonderful gal from Indiana that belongs to the Yahoo group - for micro kids - we are thinking about getting together for dinner tonight - if all goes well -

Then we went to his therapy appointment at 11:30 - but the little guy still wanted to sleep - so it was a challenge to wake him - up but we were able to - he then stayed awake for about 1 1/2 hours of therapy - they had him swinging like Superman, attempting to walk in a walker, and bouncing on a ball -

We then went to his second dive at 2:15 and guess what - he slept through that as well - he woke up half way through and was a delight - we haven't been able to feed him on a schedule - it can be quite tough in-between all of his therapy, naps, and dives. So luckily I was able to feed him before we went to his next therapy appointment at 4:30.

It is currently 4:00 and he is luckily still awake - let's hope he will remain awake for at least the next two hours - he has speech at 4:30 and Physical therapy at 5:30 until 6:30. Then if I am not too tired I plan on meeting up with Rebeccaa and her darling daughter - Eliza. (The rest of her family is coming down tomorrow) Oh nice - I just glanced at him and he is now yawning - wonderful -

These days are longer than my work days - only 34 more dives remain - please keep the prayers coming for success and no set backs -

I sure do miss my family and friends.
Boy am I excited for the weekend - but luckily since Brextin slept through PT yesterday - they are allowing him to get his 2 hours tomorrow - so my first actual day off will be Sunday.

I brought down my laptop in hopes of learning the newest version of Office before school starts or at least watching some well deserving chick flicks - and I can honestly say the only TV I have been able to watch has been while I have been feeding Brextin at the centers. I feel as if I should be the one napping :-)

Thursday, June 11, 2009

Our days just got longer :-)

Our days will now become longer - since our guy is so little - he really needs his naps - and he has decided to take them during his therapy time - which isn't going to work - so I asked the therapists if we could do some schedule changes and they were willing to help us out - so currently this is what our schedule will be . . .
5:30 rise and shine
7:00 leave the road
8:15 Dive
9:30 - 11:30 nap (I am crossing my fingers he will actually will nap here - I have no idea where I am going to go during these two hours)
11:45 therapy
2:15 Dive
4:00 therapy
6:00 head to my cousin's home

When our little guy is tired there is nothing than can wake him - today the therapist even placed two Popsicles into his hands and he hardly even flinched - then even rubbed an ice-cube around his neck - I know it sounds cruel - but the therapists were trying to do an evaluation on him so they could plan out his agenda and goals while we are down here - but they will need to wait until tomorrow - he was awake for 2 hours - they had him walking on a treadmill while attached to bungee cords - but he wasn't really walking - all he wanted to do was jump.

Our first 3 dives were at a 1.3 atmospheres of pressure and the 4th one today was at a 1.5 which means we dove deeper - I was nervous that we might see seizures - but I never did - thankfully. I have been nervous about his ears - since he is unable to tell me if his ears hurt - I had Dr.VanDyke take a look at them today - and he said they appeared to be fine. I have been bringing in Cheerios into the chambers so he has something to suck on while we go deeper - since he unable to yawn or swallow to clear the pressure in his ears (it is the same feeling as you are on an airplane)

Even though he slept for 2 hours earlier today - he was also able to sleep through his 4th oxygen dive - and I thought I could take a nap as well - but since it was the first time diving at 1.5 - I wanted to stay awake and make sure he didn't have any seizures.

I myself am doing ok - I do have a pounding migraine as I am typing his blog and am very anxious to go and lay down for a little while after I cook dinner.

My husband was able to figure out Skype - so we were able to see each other via webcam - that was really nice - so I was able to read a bedtime story to my older son - even though he is 3 hours away - gotta love technology! Plus the video call was FREE!!

I am so glad we invested in a Tom Tom it has been a life saver while I am exploring areas that I have never been to. Lately I just take the same roads every time - but have ventured out to find a Super Target.

Keep praying for progress - currently I am thankful that no seizures have appeared and no set backs!

No new photos since he slept most of the day.

Wednesday, June 10, 2009

First and second dive done!

Today was a busy day - Brextin got up at 5:30 a.m. and then we left the house by 7:00 to make our first HBO dive at 8:30. There is a lot of construction in the area and I wanted to make sure we would make it to the appointment on time -
We arrived early so he could get fitted for his special hood - they first measured around his neck and made the hood to only fit around his head - which made me a little nervous because he loves to place his fingers into his mouth - so I then asked if the hood could actually go around his waist so his hands could be inside the hood as well - and they said no problem - this has been wonderful - I am allowed to place a couple of his favorite toys right inside the hood - so he can play with them while inside - he really likes to chew on a blue chew tube - I thought it might help him swallow and to prevent his ears from popping.

The first dive was interesting - because the hood goes around his waist - he didn't want to lie down - since it would have been uncomfortable - so I rested him in my lap the whole time we were in there - I even stood him up for a little while - The time alone with him allowed me to rethink all of my camp songs, nursery rhythms, etc Eventually I had to read from a book I took in there - because I was running out of material - you can only imagine how long 1 hour can be while you are trapped inside a tank with a child who is unable to talk or respond to you -

When our first dive was done - we traveled to our next destination which was intensive therapy - Today was more of a get to know you day - which was good since our little guy decided to sleep for 2 hours during the scheduled sessions - I am going to see if the center is flexiable and would allow us to split up his therapy session instead of trying to do 4 hours straight - I just think 4 hours is too much for him in one given time period - he still needs to find time to eat - as well as sleep -
We have meet wonderful people at both locations - they really have been very helpful at making us feel welcomed - We even met a beautiful 3 year old girl from the Mirco list serve from yahoo groups - she began her dives this Monday.
Our day ended with a second dive - which went fine as well - then we drove home. I arrived home around 6:00 - so basically our days are very similar to our regular routine in regards to leaving and arriving home -

Only 38 more dive sessions - I better get going so I can get some sleep since our day will begin all over again at 5:30 -
I will do my best at keeping the blog up to date - currently no new changes - keep praying!!

Ohh ya - he played with shaving cream and did an art picture - he really liked this activity.

Monday, June 8, 2009

Tomorrow is the day - we hit the road!!

Tomorrow is the day when we hit the road!! Wish us luck!!

I am very anxious! Our first therapy session will be this Wednesday in the morning - I am very excited!

Sunday, June 7, 2009

Only 2 more days until we HIT the ROAD!!

Today is Sunday - and I have packed Brextin's going away bag along with mine - I have no idea how I will be able to fit everything into a mini-van - My cousin will probably shake her head once she sees all of the items that I am bringing with me -

I need to pack his:
Exersaucer, a baby bath tub, his suitcase, my suitcase, my laptop and webcamera, my portable DVD player, his therapy items - communication devices, z-vibe, organic baby food, his wheelchair, a portable crib, drugs and supplements, etc (it seems to be a TON of stuff)

We went to a church in the community in which I teach at - and they sure do have warm and strong hearts - they have been praying for our son for months and they strongly feel that the good Lord will hear our prayers and heal our son - we can only hold onto faith, hope, love, and prayer!

I have to believe and do what I can do for our son -

My mom keeps me grounded and reminds me that not all children see success with Oxygen therapy and intensive therapy - but as a parent - who cares for a special needs child each and every day - I can NOT give up on HOPE! HOPE is needed to keep me grounded and moving forward -

Christopher Reeves once said, "Once you choose hope, anything is possible!"

Please if you believe in prayer - please say one for our son and our family. I hope and pray that our son will be able to handle the intensive therapy and oxygen and that we will see success - along with safe travels as we hit the road.