Isaiah 61:1 "The Spirit of the Sovereign Lord is upon me, for the Lord has anointed me to bring good news to the poor. He has sent me to comfort the brokenhearted and to proclaim that captives will be released and prisoners will be freed."
Tuesday, February 27, 2007
Whew...
I'm thankful for this day to roll to an end. The last two days have literally been chaos. I have had so many appointments to schedule, so many med bills to call on, problems with insurance and then today... well, my house was a disaster and it was time for Occupational therapy to take place! All you wonder moms... how do you keep a clean house with an 8 mth old and a 2 year old??? Oh my!!!! Anyways, we got every thing back in its place in time for therapy. Joey was sized for his hand braces today. They are going to have to special order them because his measurements were odd. She thought something was wrong with his hands, but then she measured mine and well... I'M ODD TOO!! OK, many of you didn't need me to tell you that... but just in case you hadn't figured it out... now you know! =) Joey is starting to really have trouble with control of his arms and hands. He is finding himself trying to pick things up, not being able too and then once he does, cracks himself in the head with the object as opposed to putting it in his mouth. I've noticed this coming on for a bit, but I've been afraid to say anything for fear that maybe it was me just being paranoid... but a pro noticed today. So, guess it isn't my imagination. We will keep working with him though and he is still doing very well compared to what he could be doing. So, we are thankful!!
Monday, February 26, 2007
Our darkest hour...
I've been up with Abby for the last half an hour. She was having an asthma attack. I gave her the treatment and then sat beside her bed to make sure her breathing was going to normalize. I was just getting ready to wrap up and go to bed and she started crying in her sleep. I squeezed her hand to assure her and let her know that mommy was right here with her. You know, I often wonder how many of us realize that in our darkest hour, when we begin to cry, God is right there beside us. His hand there to comfort us. I am challenged by that, but you know, He is our father. I know that I would not leave one of my children alone if they were sick, in need or even hurting... why would God leave us alone? I've been challenged in my faith since Joey has received his diagnosis. Then the question is left open, "Does Abby have it?" I have had many dark hours since we stood in the hospital room and had Joey's disease explained to us. At that moment, I felt alone... How could God let this happen to my baby... but now, I look back and He was there. He gave me incredible strength and still continues to do so EVERY day. Yep... I still struggle. I get angry, I hurt, I fear... but I realize... in every moment... His hand is there because He IS my Father. I know that I need to stop more often to enjoy that... as children, we snuggle on daddy's lap... or for some those memories aren't so good... but, our memories of our Heavenly father can be beautiful and sweet! He'll never let us down... He'll never abandon us... He's there... waiting... arms open... Heart full of love!
Sunday, February 25, 2007
We survived the ice!!!!
Yeah! We didn't revisit the ice storm of '04!!!! Man, I was reading Pastor Kris's blog and well... I'm jealous! He went to Florida for that ice storm... don't you feel guilty for those of us who suffered!?!?! =) Oh well... Our trip was fun this time. Last night for supper we had the most wonderful beef! Every year mom and dad go to Florida (when do I go to Florida? Every one I know goes to Florida! Geez!!!!) Anyways, they go to this wonderful restaurant called Sonny's BBQ... Mmmm... my mouth is watering as I type! You just can't describe this BBQ. Then you have buttered toast (in a skillet of course) and crinkle cut fries. Sounds like I did a good job on my diet, doesn't it? ;) OH well... as I said... Try again in the morning!!! I just am glad they love me enough to let me share in the happiness! Today, we went to church. You know, I always fear that I'm not going to teach my kids in the right way. I just want them to grow up knowing who God is and who they can be in & through Christ. Some days I wonder if Abby comprehends what we teach her. During prayer today at church, I leaned over to tell her something and she looked at me very seriously and says "Mommy, we are prayin'" I didn't realize she was even paying attention... or that she even understood outside of our "thank you Jesus" prayer time, exactly what is going on... but she does! I tell ya, that over whelmed my heart with joy and a sense of real pride. =) Joey again was happy to be at church. He just grinned and smiled the whole time the songs played... well that is until he fell asleep. We sit up in the balcony right now for lots of reasons, but one of them is my phobia of germs. I don't want Joey to catch any thing because we have all learned, we end up at Riley. But today, Dennis (sound technician) set up a t.v. for us so that we could watch the service instead of just listening as we looked at the wall! Big thanks to Dennis!! Abby and aunt Christi (pictured above) blew on a hot dog together after church to ensure "Not to hot"! That's Abby's translation! We are back home now and have had a nice evening. Reginna (Jeff's mom) came over to cook us supper tonight. Abby always loves that especially because grandma takes her back to her room and builds houses with her mega blocks! =) Too funny! Then... something wonderful happened! We got a call from "Aunt Jecca!" She is one of the nurses at Riley. She just felt like calling to encourage us. That's always nice! =) Abby talked to her on the phone and of course... they discussed bubbles. (Jessica's and Abby's favorite thing to share!) Now.. we are off to bed! My FAVORITE part of the day!
Quick updates... Joey will be fitted for a brace this Tuesday for his left hand. Then, we are hopefully home free for the week with no more appointments! =) I enjoy quiet weeks. Next Monday, he goes for his video EEG at Riley. Abby is doing pretty good. Seems to be getting sleepy more often. We are wondering if her iron levels may have dropped again. Hmm... I'm just frustrated with how to keep that from happening. I hate to see her go back on the meds... she HATES them... that's really an understatement!
Saturday, February 24, 2007
We're coming back!!!!!
We've bundled up and we are headed back to mom and dad's house!!! This time by choice. =) I'm nervous about the "ice storm" that is supposed to be coming. I still have nightmares about the one that we had back in '04/05!!! Abby was just born. She was having lots and lots of trouble with her lurangomylasia and her reflux. So, I spent most nights sleeping with her upright in the recliner. It was a task, but I think I loved it! =) We lost all power, so my dad and brother came over to get us all and brought us to my parents house, Jeff stayed with his mom here in town so that he could still get to work. It was an experience that none of us have recovered from! My 89 yr. old grandmother had to be brought over as well because she had no heat. Well... She slept on the couch in the living room and I slept in the recliner just across the room. I had just gotten Abby to sleep (which was always a task... still proves to be! Ha!!!) Well, here comes granny across the room... stumbling over her O2 line... gets right in my face (my eyes closed hoping she'd think I was asleep and not wake me or abby) Noooo!!! That would be to easy to do! She yells "Mindy... Mindy... are you awake?" I ignored a moment longer... then she yells louder "mindy, I said are you awake?" Oh dear. Now Abby is screaming!!! So... I got no sleep. What did she want... to ask if she is a pain... well, at the moment... that question was hard for me to answer!!! =) I wanted to be real mean! But, I refrained and we got granny tucked back in and an hour and a 1/2 later, Abby was back to sleep! =) That's my memories of the ice storm! Whew... how stressful! =) Whelp, it's time to go! Lord willing, no one will loose power and this storm will not be a big deal! happy sheltering to all!!
Friday, February 23, 2007
The Pfohl Rat Race....
Today felt nonstop. Jeff and I really did a great job on our diets today! I'm so proud of us!!! Jeff worked today and well, I started the day off right but whew... did it ever feel unorganized and much like a fiasco! We rushed by the bank, then off to speech Therapy. Bubby did a REALLY good job today. He actually used his tongue to eat his food correctly today. He has a tongue thrush... for those of you who are much like me... in Layman's terms... that means that he pushes his food out with his tongue instead of using it to properly scoop the food... This is more what a child does from birth to 3-4 mths. of age. It's a natural reflex to keep from choking on things. However, it causes him to loose food and makes feeds extremely long and messy! Our ST was so excited today! It looks as though we will most definitely be getting a brace for Joey's left hand. He's really struggling with not clinching it all the time. Poor guy. The ST noticed it today as well, even before I mentioned the possible brace. Next week, Joey gets to try a sippy cup. We are very excited about that. It is going to be hard for him to adjust to this or even find one that works. His liquids have to be so thick because of his aspirations that it just makes it rough. So, we'll look forward to seeing how he progresses on that. After ST, we were off to the church to help take Angel Food orders. For those of you who do not know what this is, check out my link! It is a great ministry to the community but also a blessing to every one that participates! Jeff and I love it. We get to actually eat steak now! =) The food is usually very high quality and tastes great... so check it out! Then we raced home and had supper. We tried something new tonight. Every one has told us that you can mash cauliflower instead of potatoes for lower carbs, well, I did that hmmmm... interesting texture but pretty good taste. I mixed mine with a bit of milk, spray butter & cheese. Not too bad! Then... we had to pack up little one's to bed! That was interesting as always! When Abby gets exceptionally tired, she gets exceptionally hyper and whew!!! Look out... tonight was wild! =) Hey, she's adorable anyways! You just got to love her!!! Now... I'm going to drop!
Thursday, February 22, 2007
Someone shrunk the wagon!
Well, I'm not sure that Joey fits in this wagon. =) He tried very hard, but well... I think Papaw needs to find a bigger wagon!
Today has been a fiasco. Settling back into old routines... catching up laundry, dishes, grocery shopping... does it ever end? Joey found himself under a pile of clothes as he decided to pull up on the laundry basket... he toppled and clothes came tumbling after! He decided he didn't like helping with the laundry. Abby, well she has been so stinking hyper this evening. Into EVERY THING and whew... I can't keep up!
We are going to try very hard to restart our diets tomorrow. Neither of us are feeling good and the reality is, we aren't just hurting ourselves, but we are hurting each member of our family. I know for me, I have been grouchy and well... I'M OUT OF SHAPE! I'm hoping to keep every one updated as I go. Some wise person (pastor Don) once told me that you only fail when you give up... so I haven't given up yet... I'm just picking up and trying again! =)
We have a busy day tomorrow... so off to bed we go!
Repentance...
The race is on...
Return to church
We returned to church on Sunday for the first time in awhile. Joey's been doing so much better, so we ventured out in the cold to see what was up at Farmland Friends Church. Abby was nervous when we got there... but she soon warmed up and was her usual people loving person! Bubby, well, he just thought the music was great. He smiled and smiled! He loves Jack's Big Music Show on Noggin and well... I think he thought that Ryan's music was much better and the worship just hit the spot! All smiles! But... as the picture shows... they were tuckered out! Let me tell you... we don't often get both napping at the same time!!!
Just ducky!
Wednesday, February 21, 2007
Home at last...
The water is thawed and the sewer line is free flowing again!!! No more laundry mats, no more McDonald's, no more boiling water!!! We did it!! We are home! Jeff and His brother spent most of the day up under the trailer fixing pipes and blowing heat guns! We have been staying at my parents house and it has been a lot of fun. The kids have had a blast. Abby kept saying "papaw's house! Stay!" She loved it. But, upon returning home... they were excited. I think EVERY single toy in Abby's room is out and laying on the floor! Too funny. I am laying here waiting for sleep to fall on my two wonderful children so that I can fall in my big wonderful bed! =) I must say, I have missed home. We got to take the kids to see Kids' Connection. For those of you who do not know, that is my parents children's ministry. They really enjoyed it, but there attention span was short. KC is geared for school age, so considering, they did a pretty good job. =) Tonight, we spent the evening just playing and calling a few friends to say we were home. Joey enjoyed a good belly laugh at his sister doing a crazy dance! =) I tell you, if you ever hear him laugh, you can't help but laugh yourself! Doesn't matter your mood... the joy will spread! Well, In a nutshell, we will miss mamaw, papaw & Aunt Christi's company... but home sweet home! =)
Tuesday, February 20, 2007
Have you missed us????
Well, I am glad to say that we will be returning very soon!!! We are currently staying at my parents house because our sewer line is frozen. Things are going well though. We've been enjoying time with my parents and well... I think they are enjoying the time as well, however, I think they are tired. =) We come with lots of action. Bubby continues to do well. He had PT on Friday and they were amazed at how well he's doing. He OT today, but had some trouble. He's pushing his food out with a tongue thrush that should be very much gone by this age. Probably next week they will be fitting Joey for a brace on his left hand. He's struggling to use it correctly. Other than that, he did good today. More later!
Wednesday, February 14, 2007
I'm gettin' big!!!!
Is there a monster under my bed?
What a manly man!!!!
Well, Happy Valentine's day honey! You did a great job digging us out today! I couldn't believe all this snow today. Wow!!! I have taken advantage though! I'm CLEANING!!!! =) Yeah! They had to bring bubby a new monitor today because his bit the dust in the night last night. Wouldn't charge any more... so, we were thankful to get that today! Just glad they were out and about because I would freak if he couldn't be one. Not ready for the disconnection yet! =) Abby has spent her day helping mommy clean... or was she undoing my cleaning? Hmm... she says helping, so I guess we'll stick with that! =)
Tuesday, February 13, 2007
Snowy day...
Well, Jeff stayed home today from work as every one felt traveling was not a good idea. He did some work here from home through out the day... but this evening, we just had a wonderful family night. IT was great fun. It's been a long time since every one has been under one roof at the same time feeling healthy!!! Abby and I made Chili today. We kind of dumped half the seasoning on the floor, but that is OK! Daddy is the king of chili and he saved the flavor! Then, after supper, we all made a valentine bag to hang up... hey, we're snowed in and well... I doubt we'll be getting to wal-mart yet tonight... so we are having home made valentine's!!! The rest of the night was filled with giggles and dancing. Ever so much fun! Enjoy my next few blogs to see the days events as they happened... very entertaining!!! You know us Pfohl's... we have to do every thing with a bang! =)
They did it!!!
Jeff and Abby went exploring today. Abby was sporting a cute pair of Thermal underwear, a very long pair of purple socks to keep her toes warm, a pair of daddy's big thick tube socks (note, they go to the shoulders!) to keep her arms and hands warm, a very wonderful snow suit, one of bubby's receiving blankets for a scarf, her "jecca" hat and her strawberry shortcake snow boots!!! Oh so cute!! =) Abby wasn't too sure about standing in the snow, so she made daddy carry her... me? Well, I stood at the door taking pictures! Not to bad of a deal I'd say!!! Whew... it's getting deep out there!!!
What a mess!!!!
The day finished with dancing....
Oh the weather outside is frightful...
but that snow is not so delightful!!! OH well...we are making the best of it anyways. Joey and Abby are having a party in Abby's room, Jeff is, well, just being Jeff!!! And me... I'm just trying to stay warm! Hey, but who cares!!! We have water!!! That's what makes me happy! =) Well, we should have some more entertainment to share later! Abby is out begging for more suckers that we got from pappaw's house!!! Sugar... hmm... snowed in... do those two got together??? ;)
Monday, February 12, 2007
My water broke!!!
Ok ok... I've never truly had that experience! I'm not complaining! However, we FINALLY have running water in our house. Jeff sat outside in the cold to get it going. He borrowed a salamander from Jill and Joe and sat out there with his fire extinguisher just in case. =) He took his cell phone so I could call him if we had action in the house... however, he kept calling me! First call, "can I have supper?" Second call, "Can I have a towel? My chair is cold!" Third call, "Can I have a blanket?" Fourth call, "Can I have hot chocolate?" Well... it ended there! Me and the kids went shopping! I got the call at Marsh that the water was trickling... I screamed right in the store! I was so stinking excited. Jeff says "Well, honey, are you ok?" Hahaha!!! Of course I'm ok! I'm just excited! It was great to have that running water again! We had a crisis though... water was gushing out from under the kids bathroom. Well... who ever lived here previously had put a "T" pipe on the sewer drain and instead of capping, they duck taped it! Oh good grief! So, poor Jeff and his brother... they were out there fixing it tonight. I'm so thankful though for water! You don't realize how much you appreciate something until you have it.
Updates: Bubby is having his OPCG tonight to see if he can come off the O2 yet. I hope the test reads right. They left it here for me to hook him up too. Their comment "You've got the experience!" Oh, is that suppost to encourage me? =) I'm praying that he can come off of it. He absolutely hates it! I think it just irritates his little nose. I don't blame him! It's been a busy day, so he's pretty tuckered out. He's supposed to have therapy tomorrow, but well... snow's comin'!!!
Hey Pastor Kris... Joey agrees!!!!
Oh my! Daddy started to sing Kumbyah tonight... well, Joey agrees with PK's statement... No casting votes for daddy! Joey gave him a look of "Stop it now!" =) I almost fell over laughing! Every time he stopped singing, Joey went back to playing... as soon as Daddy sang... Joey eye-balled him again with a look of "Oh dear, not again!" Oh too funny!!!
Sunday, February 11, 2007
Mamaw and Papaw are back!!!!!
Well, it was very very exciting today! Mamaw and papaw arrived back from Florida after being gone for nearly three weeks. Both kids were very excited to see them this afternoon. Abby learned to play cards with papaw! Then she weedwacked every one with her weedwacker toy. Bubby, well, he just took advantage of moving from person to person to snuggle or help him to stand. Abby then enjoyed a CALMING bubble bath (we had an emotional moment and whew... bubbles were needed to relax!) It was nice to have them back home and to get to spend time with them. After arriving home tonight, Jeff spoke with my brother and is hoping to fix our "frozen pipe" situation. We STILL do not have water and with the possible snow moving in... HELLO!!! We need water quick quick. So, tomorrow, he'll be outside shivering and trying very hard to get those pipes moving. Abby tried on her new Dora panties that mamaw and papaw brought back from Florida. She was so excited but we had a bit of an accident... OK, a major puddle!!! =( Daddy said he felt like the dog was back as he was cleaning it. I begged him not to get caught up in the moment. =) All I'll say is that poor dog! =) All in all, it's been a pretty good day.
Saturday, February 10, 2007
Excitement every where!
Well, today was distribution day. Jeff was up at 4:30 a.m. and on his way to Farmland to unload the semi. Me? I slept in until about 7:30 when Abby awoke and just wanted to snuggle... ahh... I enjoy those moments! Especially in the morning. Bubby slept until about 8:30... so we had a pretty quiet morning. Not too shabby! =) Unfortunately, we still had no sign of water today. So, Jeff came home and spent an hour crawling around under the trailer to see if he could figure out what was going on and why on earth the heat tape wasn't doing it's job... well, he found out... IT'S NOT WORKING! Hmm... that added some fun to the day. It was a given obvious that it wasn't working, however, assumedly, we had hoped that maybe it had just been too cold, but with the temps some what rising, really the heat tape still is obviously non-effective. So, he called his brother, Mike (in picture above) and together they started crawling all around under there. Found some surprises that they'll have to repair this spring. Yeah!!! =) They called all over Muncie looking for heat tape and had absolutely no luck. Where did they find it? Selma! Yep, little tiny Selma came through! So, off they went. Meanwhile, I'm preparing to go to the laundry mat! By this time, I was wearing a 2 day old outfit! Whew! Not a good thing... so they returned from the hardware store to help carry out all our stinky clothes! Upon arrival to the laundry mat, there was a couple there from our church. She started giggling and asked "Is there any place in that truck you didn't manage to squeeze in laundry?" Ha! We just kept coming and coming! =) You'll see those pictures tomorrow as they are on my sister's camera. Abby has never been to a laundry mat and well, she just had a ball! Her and bubby were every where! We took bubby's walker along and he was under the folding racks and people's feet! Thankfully, the place was full of grandmas and they were having as much of a ball watching! Oh so much fun! By the end of the day, I'm not sure who's nerves were more shot... mommy's or Aunt Christi's! =) We were a bit FrAzZlEd!!! WE arrived home with semi wet clothes as I'm a stingy stinker and didn't want to spend all that money on dryers... so Jeff started unpacking, hanging what was dry and drying what was wet still! Hey, our water is froze! Not our dryer!!! =) We finished the day shivering over a hot bowl of homemade potato soup (Oh, bubby had turkey & squash with his usual side of butter and topped it all off with a wonderful bottle of Ketocal!!) All in all... it was a great day! =) Oh well... we are all still smiling! That's the important thing in every body's day!
Friday, February 9, 2007
The Riley Experience....
Well, we arrived in Indy on Wednesday early enough to run Abby all around a motel room and completely wear her out! It worked! We talked all day about the pretty buttons they were going to put in her hair and that they would be taking a picture of her sleeping... well, she loved the idea! She did well. However, It broke my heart. She rolled over just before going to sleep, grabbed my hand and in the most sweetest voice I have ever heard asked "Mommy, am I OK?" I wanted to just grab her up and cry. I never realized how much she is in tune with every thing. We have been so worried about every thing with bubby and the possibility of her having this, I never stopped to realize that she may be understanding those fears. Well, we talked for a little bit and I told her that she was going to be fine because mommy and daddy love her and Jesus is right there in her heart! She smiled and squeezed my hand and went right to sleep! I wish that I could have innocence and faith that she has. That little girl loves Jesus with all her heart and she KNOWS that he takes care of her. Bubby is feeling a bit better. His diarrhea seems to be clearing on its own... THANKFULLY! We saw Neuro today. They are going to schedule him for a 24 hr. EEG to see if they can figure out what is causing the tremors that he is having. The doc is not sure that it is a seizure, so he's going to do this just to make sure it isn't anything neurological and then if it isn't, we have it on video and they can figure it all out. During this time, they are going to do some blood levels on him to see if his sugar is out of whack or if it is OK. Also, they are going to do another urine screening on him to see if they could catch something genetically for his disease. They have also said that within 2-3 mths, they will be sending us to Atlanta to have Joey's muscle biopsy done. He said that if Joey were older and able to voice what was going on, they'd wait and see... but with his age, the more we can find out, the better the chances are for him to have a smoother run at life. So, off we'll go!
The kids enjoyed visiting with Aleyna today. (bubby's dietitian) Abby saw her and absolutely ran to her! Bubby, well, he BELLY crawled to her! Go Joey! She'll just have to come home with us because we tried all night to get him to do it again... I guess we really are Mr. & Mrs. Chopped liver! =) On an extremely funny note... a lady in the elevator looked at bubby and goes "Oh my! What fat cheeks you have!" Then, she looked at Abby and grinned stating "You have them too!" I was waiting nervously to see who was next and low and behold she looks at Jeff and says "Now I see where they got them! They got them from daddy! Look at those cheeks!" Ha!!! Oh my! Absolutely made my day! I think I chuckled in my sleep about it last night!
The return...
We have returned Home after a long three days in Indy!! We are so thankful to be in our own home! However, we still have no running water. Back to hauling buckets and gallon jugs, microwaving bath water and boiling water for dishes! =) Oh the comforts of home!! ;) Any ways, we have our own toys, our own beds and we are willing to deal with the other stuff just to be here!
Tuesday, February 6, 2007
Cast your votes here!
Busy busy!
The last couple of days have been interesting around the Pfohl household. We got the results to Joey's skin biopsy which led to mixed emotions in all of us. We were excited because PDH was ruled out in him which is WONDERFUL news. When we asked the doctor in October if this was good news or bad news if he had this... his exact words were "Let's hope for a no... it's the last thing I want to tell parents!" So, we breathed a sigh of relief yesterday, however, we also got nothing definitive for Joey's disease. They really need to pin-point what the gene is that is causing this in order to treat it more aggressively. So, some time we will be heading out for Atlanta to have a muscle biopsy done on Joey. That's a bit nerve racking! This also opens up the door for Abby to be susceptible to this disease. They are probably going to do some blood work on her to check for now if there are any immediate abnormalities. If blood work is not abnormal, they'll wait on Bubby's full diagnosis. His diagnosis could lead the way to us knowing in what form and how much Abby could be affected by this. So, some fears were relieved and others added! All in all... They keep commenting that for the circumstances Joey is doing very well. His physical abilities have improved. So that is wonderful. Our occupational therapist however is starting to note some delays in Joey. His oral motor skills are more like that of a 4 month old and his hand abilities are around that area as well. Today, she worked with him on utilizing his arms to reach for toys and hold weight. He used his right arm a lot but his left was not being used much at all. So, he's got some work, but he's a determined little dude!!! =)
It has been good to hear from some of you through e-mails. Feel free to leave comments, e-mail or even call! We don't go far! =) It's too cold!! Abby goes to Riley tomorrow for an over night sleep study and we will probably be taking Joey as well. we found out today that he has lost 1 lb. 4 oz. Local doc didn't do anything for his diarrhea or his weight loss. Just wanted to see him back in a week... so we are probably going to visit Riley tomorrow. I think he is apprehensive in helping Joey and understandably so. Joey comes with a lot of info and a lot of challenges. If you don't know much about the disease or his diet... well, I don't blame any one for stepping back! So, we'll probably go to the ER to get him looked at and see if we can get some where with all this. Busy times ahead!
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