Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12

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Wednesday, October 31, 2007

Wordless Wednesday.........

Happy Halloween


Visit 5 Minutes For Mom for more Wordless Wednesday photos.



Tales from the Scales




Well here I am again. Posting that is :0)
I've actually been here all along since way back in May when I first began. Over the last few weeks my time has been quite limited as my little boy has been hospitalized several times. I'm really sorry I haven't been more supportive but quite honestly my time has been consumed with just keeping him alive.

For the past 2 weeks things have settled a bit. Granted his schedule is still very demanding but through it all I've managed to keep my eyes forward focasing on my goals. During his hospital stays I wasn't able to excercise like I normally do however, I still managed to lose rather than gain. Not huge amounts like when I was excercising but, a loss is a loss and I'll take that any day! :0)


I'm so thankful that I've been able to make it back to they Y and begin swimming once again. Just after 2 days I can already see a difference. I began this little journey on May 22 and to date I have lost 55 pounds and lots of inches. I have been taking pictures along the way but I'm not ready to share those just yet. I still have a long ways to go but I'm still going strong! I'm praying Jophie will remain well enough for me to continue on with what I've grown so accustomed to doing. Not only is swimming my most favorite thing to do but its one of the best excercises not to mention it has become my only reprieve from the stress of dealing with a medically fragile, chronically ill child. I can't even express how much better I feel when I'm able to get just that little 2 hour break.


My hope is that I will be able to pick back up following along and posting on Wednesdays. We big beautiful women do seem to do better in packs afterall! :0)


Good Luck everyone! I wish you a very successful week ahead! :0)


Monday, October 29, 2007

Happy Fall Y'all Bloggy Giveaway......

Photo Sharing and Video Hosting at Photobucket

Wheeee! It's time! It's Time!

Shannon Rocks in my Dryer is hosting another bloggy giveaway!

Click HERE to read the guidelines and join in the fun!

I'm giving away the cutest Tinkerbell Hair Clippie handcrafted by me using Swarovski crystals sure to please any little girl!



To enter just leave a comment on this post. You don't have to be a blogger to enter but you must leave me an email address with your comment so I can contact you in the event you do win. Contest is open to U.S. residents, Canada, Japan, England and Australia. I will leave comments open until Saturday Nov. 3rd at which time I'll use a random number generator to draw a winner.

Good luck!

Now go have some fun and win something!




Tuesday, October 23, 2007

Saturday, October 20, 2007

Jophies Night out.........

We don't get out too often
Jophie and I....

Most of our outings entail a visit to the doctor, medical procedures/tests or worse hospitalization but thankfully this trip involved none of the above.

Jophie had been having a really good day Thursday. He was sooo chilled. All vitals looked good and he was full of smiles all day. We had been preparing ALL DAY because well thats what you have to do if you go anywhere with Jophie.

This is NOT an easy task

  • Hair was washed


  • Bath was done


  • Clothes were laying out


  • Meds and Food had been given


  • He was napping peacefully


  • Oxgyen Tanks were swapped out for full ones


  • Suction tubing was changed and then packed


  • Pulse Oximeter was packed


  • Nebulizer was Packed

By evening I was preparing his evening medications/feeding/Water infusion/tubing/syringes so this could all be placed in a small cooler. I also packed some emergency meds to cover all possible complications while we were out. Now all that was left for me to do was shower and wait for Tammy(dear friend/nurse) to arrive at 7 p.m.

You truly never know what to expect when planning/traveling with Jophie. There are always surprises around the corner so needless to say I was a bit edgy. I wanted this to be a fun, relaxing trip for him. More than you know.

Tammy arrived and we got him ready. We started out the door and he started. Stridor, agitation and then a full blown asthma attack! I almost said "forget it"

I'm so glad I didn't! :0)

The Destination:



Big Sandy Super Store







The Purpose:

To pick out the larger portion of Jophies Wish. You see we had to take Jophie and let him actually sit in the theatre seats to see what would work best for him because of his back and limited ability to sit unassisted plus, we had to let him look at the tv screens to see which one he could see.

Jennifer(Jophies Wish Rep) had arranged in advance with Debbie(the manager) to meet after closing time. I was so thankful they were able to accomodate us.

When we arrived I had Tammy start Jophies meds while I went in and spoke with Debbie. It seems she has 2 family members that are immune compromised so she was very aware of the dangers to Jophie. She was indeed prepared for us! She sent everyone home except 2 employees who were very healthy. I can't express enough how much I appreciated them taking such precautionary measures.

And then she says:

"Jennifer said to pick whatever you want."

Be still my heart...Did I just hear what I think I did??!

I went back outside to pull the van closer to the front door and to begin unloading Jophie. This was a bit traumatic for Jophie as we were sitting at an angle which in turn caused us to transfer Jophie rougher than what we like. Can I just say I HATE our lack of safe/convenient/efficient transportation and or transfering of Jophie from van to chair. He always seems to get hurt and it just KILLS me!

By this time I was even more worried that this trip had been a mistake. UNTIL.....

We walked through those doors and let me tell you....I have no clue what it was about this place but he immediately calmed down. In fact you would have thought we had brought him to an amusement park. He was so fascinated by Big Sandy. How funny is that??!

Let me just show you how much so.....

Jophie seeing the Big Screen for the first time.


This was so cute! His mouth gaped open and staring like he was seeing aliens.

Take me to your leader! LOL

He sat like this for the longest time just staring and the best part.....It was a football game! Ah yes he is his mommas boy! :0)

Well alrighty then I guess he's chosen his tv. That was easy so lets move on to the next phase.

We headed towards the Theatre/Surround Sound packages and as we turn the corner........Everywhere you can see there are TV's! Rows and Rows of them.....

ON. HIS. LEVEL.




This was even more adorable! He had this look like......"OK can I have a wall like this at home" He just kept looking from one tv to another. Thank God they had the same thing playing on every channel or I think it woulda pushed him over the edge with so many choices! LOL

While he continued to drool literally over his newly discovered love for electronics, I stood off to the side and was just bursting with pride at my boy who clearly LOVES all things electronic as much as his momma. He's just like me folks and I LOVE it! :0)

OK next came the Theatre/Surround Sound package. The sales rep cranks up the sound and I kid you not.....Jophie was shakin in his chair and I looked like I had ants in my pants. He kept lookin around like Wow! "What kinda ride is this?" And ya know what....I could see in my boys eyes that he was growing to love this place even more.

Once we had all the electronics squared away we had to pick some seating. The theare seats were nice BUT, they were too big as in wide. The arm rests were pretty much non-existance which meant Jophie would have no support sitting up. Just when I thought all hope was lost I turned a corner and saw....

"The chair"

A chair like no other! This was a big ole' smoooooshy/marshmellowy/leather chair. Oh I just had a feeling. My gut was telling me this was the chair. The true test would be when we sat Jophie in it.

Need I say more??

Literally 1 minute and he was asleep. No Kiddin!

THEN I look over and see this:

All righty then! He's chosen his chair! This chair even goes all the way back like a bed and the best part is his back just sinks back into that leather and it doesn't hurt him. He's gonna love it!

As we were leaving we caught him peeking at his tv again. How cute is that?? All and All it was a productive and fun evening. The only thing left to find is theatre drapes, lighting and a cotton candy machine. I'll get right on that Monday.

And if by chance your sitting there thinking how weird we are for liking a trip to Big Sandy. It's OK. Really. I suppose we are weird and ya know what? I wouldn't mind calling up our new friend Debbie to see about spending another fun filled evening(after hours of course) in mine and Jophies new favorite vacation spot. And don't you be surprised if one day your browsing Big Sandy and you see this momma and her son all stretched out on those big comfy chairs watchin one of those big honkin screens!

Be sure and say HI when you pass by. Now pass the Cotton Candy please :0)

Jophie continues to do well. We are 5 days out since the last dose of antibiotic. We haven't gotten his sodium level yet. Labs were drawn Wednesday but the sample hemolyzed. This was repeated on Friday with results pending. Upset tummy, persistent stridor and bathroom woes continue to plague him.

For now we soldier on and continue claiming this verse.

God promises us in Isaiah 43:2 that "When you go through deep waters and great trouble, I WILL be with you."

Once again I have to stand on this promise and KNOW its true. I have to believe it will all my being. There is no room for doubt.
I have to Praise him even in the Storm and it does indeed seem to be letting up! :0)

Thank you once again Casting Crowns for this song and others that continue to be a soothing balm for my soul.

  • One Day
  • One Hour
  • One Minute
  • One Second
  • One Step at a Time.......

OK gotta scoot and yet again this momma wants to thank you from the bottom of her heart as you faithfully approach the throne in Jophies behalf.

Looking upward!

Fun Fun Fun!......

Janice and Susan of 5minutesformom have gone and done it AGAIN!

How'd you like to win this SURF UP! Prize package? I know Jophie sure would!

Or how bout this beauty??

CASIO has generously offered one of these pink beauties specially bundled with a camera case with pink stitching and a pink ribbon-clad lanyard to show support of the National Breast Cancer Foundation (NBCF.

Lisa The Preachers Wife has a fun package too!



Click HERE for your chance to win Beths "Loving Well" Study bundle package! Cute bag included! Wheee!

Now I'm off to do a little Jophie update! :0)


Wednesday, October 17, 2007

Wordless Wednesday.........

Peeeek--EEE--Booooo!


Visit 5 Minutes For Mom for more Wordless Wednesday photos.


Friday, October 12, 2007

Make A Wish.......

It's Wish Time! :0)

Make a Wish contacted me to say they were ready to begin Jophies wish next week. A painter is coming by to discuss colors. He knows we are converting the living room into a theater so basically he just needs us to pick a color and to get ideas on how we want it to look.

I have a few color swatches that Katy(friend/Jophies Aide) picked up and I think I've narrowed it down to about 5 colors. It's been so long since I've been to the movies that I've forgotten what the inside walls look like. I know they use a darker color and if my memory serves me correctly they usually have it painted in a burgandy/maroon/purpish/rusty/redish color depending on the theatre.

Jophies wish representative is so sweet and is working so hard to make this perfect for him right down to the smallest details. I can't wait to share pictures when its all finished.

One thing we need to do soon is take Jophie to Big Sandy. They are putting in theatre seats only not the hard backed type. These are more of a recliner style but, because of Jophies back we need to physiclly put him in each style to see which seat is going to work. I'm hoping by reclining the seat a bit he will be comfy. The only other thing would be to decide on dual or single seating and once again this will all be up to Jophie. :0)

Our plan for now is to call Big Sandy and explain the situation including his compromised immune system. We hope they will be willing to let us come after they have closed for the evening. Lets hope they will agree!

Now I need to go finish up what I've been working on for the past few days. We have to clear all we can out of the living room so they have room to work. At the moment it looks like a tornado has been spinning around in there! No worries though cause this momma will Git R' Done! :0)

Jophie still has a few more days of antibiotic and he's still looking good. Next Wednesday is bloodwork to re-check his sodium level. Please continue to pray that the sodium level in his bloodstream is normal and above all pray those germies away from my sweet boy.

This momma thanks you from the bottom of my heart for your persistance as you continue to petition the throne in Jophies behalf.

Thursday, October 11, 2007

The Littlest Helper.....

And at this point we'll take all the help we can get.....


Tuesday, October 9, 2007

Home again, Home again Jiggity Jig........

We're home and boy does it feel good! Wheeee! :0)

We actually got home Sunday evening then had to go right back to West Virginia today for a followup appointment so we could get all our ducks in a row.

Jophies Hypernatremia is still an issue but at the moment its stable. On the high end but stable. Normal range is 130-145 and as of his dishcarge from the hospital Sunday he was hangin out at 145. I'm having to push 120 ml of water after each feeding just to keep it in check. He is very volume intolerant so its taking me 24 hours a day just to fit it all in. Phew!

I do have a plan though.
Well you knew I would right?? :0)

I have a window from about 6 a.m. to 9 a.m. where I can sleep. As of now I can't because of fitting in all the water around the feedings. I had Sherrie(his ped) write a script for a feeding pump. Now this is going to be tricky to get this paid for because he is already being bolus fed using tubes and syringes. It actually takes around 3 hours to feed him because he can only tolerate about 20ml(4 tsps) every 20 minutes which is why I don't pump feed his food not to mention it makes him sick to have that heavy formula lying on his belly all the time.

OK so the state says you can have only ONE of the 2 choices for tube feeding not both.
SO, being the sneaky one that I am and knowing how those coniving folks work up there I had her write it not for formula feeds but rather water treatments due to high doses of sodium in the blood with the diagnosis of hypernatremia. Well they'll glance at that and not even bat an eye cause it says NOTHING about formula or regular feeds! It's all in the wording folks. Now lets pray it works! :0)

He also had a lower left lobe pneumonia which I think was at the same time as the lower right pneumonia he had a couple weeks ago. The Xray showed it as stable and improving which I don't doubt because he was getting better that way. His Mic-key sight did grow enterobactor but with me changing out the button plus being on the antibiotics already we think thats resolved as well. The sight looks just fine. His little bum is all raw/bloody again from the poooey which is most likely antibiotic induced. He still has to take the Omnicef but, only through Saturday and that will be it on the infection front then hopefully his bum will start to clear. It looks better today but Lordie bee what I have to do to keep it that way! Just call me the poop police! LOL

Tomorrow I have a bazillion people to call....
  • Supplies have to be ordered
  • Meds have to be picked up at pharmacy
  • Supplies that I've already ordered are coming tomorrow
  • The health department nurse is coming here to give Jophie his flu shot plus I'm gonna if she'll bring mine as well
  • The Social worker for the program Jophies on is suppose to stop by so I can sign the papers that will ensure his services continue another year
  • The feeding pump should also arrive tomorrow then I should be able to get some sleep
  • I have messages and out the wazoo about organizing Jophies annual fundraiser. I've truly been trying to deal with this for 6 weeks but for some reason I just can't find the time! Go figure....
  • Details need worked out so Jophie can have blood drawn here at the house each day for the next 10 days to make sure that sodium is doing what its suppose to
  • Make a Wish called today while we were at the peds office so I need to return her call as they are ready to start his wish. Wheee!
  • And last but certainly not least, I have to put on my angry eyes as Mr. Potato head would say so I can start rattling cages about Jophies subsidy. Here we sit in the 2nd week of the month and they still have NOT paid him. I do not have time for this not to mention I'm just plain tired! Phew! and UGH! all at the same time.

But......

This momma is playing Pollyannas glad game!
I'm so thankful we are home and even more thankful that he's finally looking more like himself. :0)

Here's a pic from early Saturday morning at the hospital.


Now isn't that MUCH better than the last pic I posted?

OK gotta scoot!

Thanks again for all your prayers as you persistantly approach the throne in Jophies behalf. I appreciate it so much.

Saturday, October 6, 2007

Hypernatremia............

In case you haven't figured it out we are in the hospital again and have been since Wednesday. Jophie was doing very well. In fact I had just made the comment that I felt as though "finally" we've made it out of this storm then next thing you know we're dodging lightning bolts and twisters all over again.



Let me just prefice by saying I still believe we are making progress. Overall on the infection front we've got the tiger by the tail so to speak however, we now have this darn hypernatremia to deal with.



Look at this picture. Is it just me or can you see how swollen his face looks??


I took this picture right when we got home from Sherries office Monday evening. Before we left her office he was acting "odd". Before we got home we had to give him tylenol to try and calm him which didn't even begin to touch his problems. I transferred him to his bed and checked his temp which was 101.2 and he was setting his monitor alarms off with a 188-200 heart rate. This was all so frustrating and odd at the same time. He was in wonderful shape until we took him out. We do keep his environment very controlled inside but I have no control over the outside environment which lately seems to just make his body go haywire.

Please bear with me as I talk my way through this. I need to do this for many reasons but mostly so all these thoughts/symptoms can be in one place in the hopes that maybe I can piece this together or better still someone reading might say, "Hey, I know whats going on".

The last 4 days I have been cramming my brain with as much information as I can concerning Hypernatremia that is after I bout ripped my hair out the first 2 days trying to stay online! It musta been a server problem but I like to think I'm some big computer guru so for now I'm saying I fixed it. :0)

OK.....Lets start with a definition because thats where I started.

The normal concentration of sodium in the blood plasma is 136-145 mM. Hypernatremia is defined as a serum sodium level over 145 mM. Severe hypernatremia, with serum sodium above 152 mM, can result in seizures and death.

Jophies level was 157 when we arrived at the hospital and suffice to say he was very ill. Once the labs showed such a high number they triple checked it then swapped his fluids out for a cocktail that slowly reduces the sodium with slow being the key. IF you drop it too fast it can cause cranial hemorrhage and that my dear friends is when I decided I'd better educate myself a bit more on this little problem.

As you can imagine my mind is all over the place trying to piece this all together. I have lots of questions and unfortunately there aren't too many answers and that drives me crazy or should I say even crazier than I already am. :0)

I've picked my brain to death trying to pull clues from what I've observed over the last few weeks. I've even went back over a year because honestly he's been having problems for over a year now.

Here's where I begin to ramble on and on which I've been doing for days but now the only difference is I'm making you listen to.

How long has this been going on? Is it possible that this is whats been wrong for over a year now? He presents with dehydration almost every hospitalization even when I think he doesn't appear dry to me. He's been spiking temps for over a year in which some are related to infection but other times we just scratch our heads. Both the dehydration and the temps are symptoms of hypernatremia as well as seizures/seizure activity, jumpiness and one of the scariest ones is paralysis of lung muscles. Umm duh....His lungs are so compromised to begin with so can't you imagine how much trouble he'd have with this going on?? Could this be the source of all his pain over the last few weeks?? Now am I just crazy or does this scare anyone else?? Maybe I'm just being a wacked out anal mom??

I find myself questioning my sanity all the time especially when the docs don't seem as alarmed as I. Often I wonder how much they really do know about something unusual? Do they go and look it up to prepare themselves so they can care for the patient better? I know I would for sure especially after dealing with Jophie all these years (who does not follow the book by the way) it tends to make a person a bit more cautious ya know?

The plan so far is to continue lowering his level with the fluids and pushing more free water via his Mic-key button. Course he has to be poked to death to get those levels. He started at 157 then dropped to 153 then to 151 and hung out at 151 then finally Friday it was 144 which is within normal limits but still on the high side and now this morning....well yesterday morning he was back up to 151. Crud!

We actually were leaving Thursday but the Xray showed a probable left lower lobe pneumonia. We had to repeat that Xray twice and still they aren't 100% sure. I know your probably thinking why in the world can't they read an Xray?? Jophie has a more than 90 degree kyphotic curve. You don't have to know anything about Kyphosis to know that more than 90 degrees is a kiss your butt curve. Now let me paint you an even clearer picture. There's only one way to get an Xray of Jophies lungs. He can't lie flat on his back so I sit him up in bed on the side with his back to me then I place the film between my stomach/chest and his back and lean forward holding it in place then I have to pull his arms that are contracted up, back and to the side and still its not great. The reason he had so much trouble reading this one is because Jophies heart was in the way and no need to rub your eyes because you absolutely read that right. He is so curved that while sitting up his heart shows up in the lower left lobe of his lung. I know it makes me blood run a bit cold each time I hear it too.

I started this morning by trying to double his free water which would be 120 ml after his feeding. The nurse then came in and said the doc had written orders to do exactly what I was doing. That morning I was actually able to add 140 but by lunch he was drowning. He is very volume intolerant and with his lung problems if you feed him too fast or too much liquid he just drowns. It's really a touchy balancing act at best and thats when things are working properly. At the moment its going on 5 a.m. and I still haven't given him all his last meal nor have I started his free water not to mention I'm already short 120 from earlier in the day. At this rate I'll be up 24 hours a day but if it works it'll be worth it!

Tomorrow at noon they are going to check the level again. I sure hope all this work I've done this past 24 hours has paid off. If not then they need to start checking underlying problems involving the endocrine system and all hormone producing glands. We do know his adrenals are bad so it wouldn't surprise me if something else is as well with the steroid use.

Please continue to keep Jophie in your prayers. I'm also dealing with some things that should not even be an issue but are. It's literally driving me batty and I honestly don't have time for it but it's something I can't ignore either plus Monday the docs trade off. Each of the peds docs rotate as attending on the floor for 2 weeks at a time and just so happens the one coming on Monday I have issues with. I'll not go into details but it's a very horrible situation which once again I shouldn't be placed in. And last we have a tentative date for Jophies annual fundraiser on October 21'st. I wish he could go but I'm afraid it's too late in the season to expose him to the germs that are raging. Sincere will be singing for us once again. I'll post all the details once they are all confirmed as well as contact numbers/emails in the event you are local and would like to help in any way.

OK...my eyes are literally slamming shut. I need to get up and move around to stay awake so I can finish his food/water.

Thank you all for your continued prayers. I appreciate them so much! :0)

Weary but not broken.......




Tuesday, October 2, 2007

Feed my Fishies