Thursday, March 31, 2011

The dream

I had a dream last night. We were all watching TV while Jude was lying in his bed. We were watching a movie that had all the major figures from our childhood in it like Santa, tooth fairy, etc.

Emily said "Mom why is that a grown Elf" 
I replied "It's not that's father time they are just pretending".
Jude said "oh" and looked like he understood a bit which shocked me.
I said "Jude do you understand they are pretending do you understand Santa Claus and such?"
It took him awhile and he finally got out "yes mommy" with a smile

I liked the dream

Wednesday, March 30, 2011

G button update

The pediatrican prescribed a topical antibiotic for Jude's g button. I didn't think much about the topical portion of it until I left for work this morning. Jude was screaming again because he was in pain and I noticed his G button area was a bit red. The nurse said it has a bit of green discharge yesterday. I began to wonder why the doctor would prescribe a topical antibiotic for something that may be internal....but as my husband says she is the doctor.

So I took it upon myself to call the GI surgeon that placed the G Button. He said if it is in fact a true infection he would treat it with oral and topical antibiotics. He suggested we bring Jude to him or if we see the red circle around the button begin to spread to go ahead and go to the ER. Mike is understandable frustrated with all the recent doctor appointments. So Mike went to pick up the ointment and they are going to apply it today to see how Jude does. The nurse did remove the G button and she didn't see anything under it.

We are basically doing a wait and see at this point. Hopefully the medication will solve the problem or we will take him for further evaluation.


Tuesday, March 29, 2011

g button issue and a video

Jude seems to be having a large amount of discomfort in his tummy. We noticed this issue this weekend but the issues has gotten progressivley worse. It seems to be centered around his G button site. Mike and Charlotte are taking Jude to the doctor today to rule out an infection.

Here is a video of Jude listening to Emily practice her Clarinet.

video

Monday, March 28, 2011

a little update

THANK goodness ....... I am finally FEELING better! My head is still very stuffed up and I still somewhat resemble Oscar the Grouch when speaking, but overall I am 100% better than what I was. I told everyone that the infection I caught resembled the black plague mentioned in the Bible. All kidding aside...I am worried about Jude catching what I had.  My immune system had a hard time handling it.........I am not sure what his would do. After several rounds of 875mg of antibiotic I am finally seeing the light.  I tried to resist the medication until the doctor asked me if I was "serious". Tonight was the first night I picked Jude up and nestled him close since I have been sick. I figured that a weeks worth of antibiotics should keep me from being contagious. Jude was SO happy to have me holding him. He smiled, and giggled, and nestled into me. Being close to people makes Jude happy. I know he is getting bigger so I wonder how we will cradle him when he is ten..........but we will find a way.


I feel like I am pretty out of touch with everyone since I have been sick.  I have the capability of keeping up with my multiple jobs, friends, and family when I am well. In fact, I LOVE IT! I love being busy and talking to everyone. Although when I am sick I lose track. 


Due to my recent sickness I have learned that people could be doing more to help me at home when I get in from work.  We had a bit of a come to Jesus meeting at my house tonight. Not everyone wanted to attend the meeting, but those that did seemed to grasp why I might have some issues with the lack of tasks being done when I am at work.


Just a few more day until the Emily's Smile Boxes Spring box making party. I am very happy this is being completed :). Lot's of kids will benefit from these 200 boxes being made.  

Sunday, March 27, 2011

Sleep Study

I thought I was feeling better yesterday and could see the light at the end of this sick tunnel I have been in. Today I feel even worse than I did and I am so annoyed!!! I have a Scentsy party at 2pm and I have no idea how I am going to muddle through it. I am hoping this medicine I just took will kick in. I am in a pretty foul mood too and don't even want anyone to talk to me.

Jude's sleep study went well. The boys got home about 7am and nurse Allen came in to let us all sleep for awhile. The results have to be read by the neurologist but the technician did reveal a bit to Mike. He said Jude had focal spikes throughout the night. He also said that we had labeled startle seizures and the doctor said he thought it was a natural baby reaction are indeed seizures. He also said Jude is seizing right before he wakes up and they think it's leg pain too. The doctor will not want Jude sleeping at night so they will most likely prescribe a sedative. The seizures will prevent Jude from learning and progressing.

So we are waiting on the official report but we do know a few things.

Friday, March 25, 2011

Cough, hack, sneeze, and Jude's sleep study.

It's been a bad year for us getting sick and I hate it. I am not sure what is going on ......... maybe it's this insane TX weather? One day it's 49 and the next it's 85? We take our vitamins, we eat well, and are overall healthy. It's so on my nerves. I have never been as sick as I am right now and  it needs to go away!!! I have done everything I can tonight to get rid of this crud. I just hate being sick.

Mike is with Jude at the sleep study. They have been at the building with Jude's EEG hooked up since about 11am. They will get discharged in the morning about 6:30am. Mike said that when Jude had a seizure for over 6 minutes the people at the facility came rushing in the room in a panic. Mike assured them that Jude would be fine and this was pretty normal because Jude had just woken up from a nap. Jude always has long seizures when he first wakes. How far we have come that they last 6-10 minutes vs 20 prior to the Felbatol.

Here is a picture Mike just sent of Jude. I miss my boy but it's probably better that he is away from me right now.


Thursday, March 24, 2011

Sicklies and new braces

I am home with strep throat and Em is at home with a sinus infection today. We have both been quarantined by Mike. I am hoping to be back to work tomorrow. I dislike having to take sick days.

Today Mike took Jude to get fitted for new AFO'S for his legs. He has outgrown his other pair and his right foot has really started turning in. This happens because he doesn't walk on his feet. He spends about an hour each day in his stander but it's not helping. In addition his hands are starting to turn in too so he is getting new braces that work better on his hands.

Tomorrow is Jude's sleep study. I doubt I will be able to make it since I have been  sick. Mike is going to take him out and stay with him overnight.

Jude has a new haircut and it's super cute. He has a bit of a Mohawk so we are getting a kick out of him.

Tuesday, March 22, 2011

Jude's swallow study

Jude went for his swallow study this morning. Mike said he had a bit of trouble swallowing, but the good news is that Jude did not aspirate. They said he had a bit of "hang time" on the nectar but overall things went well. We are not going to jump into feeding him by mouth just yet. They are going to do what's called Vital Stem on his throat. It's basically electrical stimulation that will possibly teach his throat to react at swallowing.

Mike told me that yesterday Charlotte was playing with Jude and she began swinging him out and letting him fall in her arms a bit. She told Mike that he started giggling and then gave her a full belly little kid laugh. He even pushed against her wanting her to continue to play with him. I hate I missed his laugh, but I am so happy he was playing. I tried to recreate the scene when I got home, but he wasn't into it.

He was all smiles this morning when he left for his swallow study. Tonight I plan on going home and just holding him while we watch TV.


Monday, March 21, 2011

Pageants, Jude, and ponies.

Jude did very well all weekend and I am very proud of him, it's almost like he knew we needed his cooperation. This weekend Emily competed in the same pageant she participated in last year. So therefore, it was an "Emily" weekend. She gets a few of those a year and I think she enjoys them. I put all my attention on her and her worries about Jude and the rest of our lives melt away. We lock ourselves into a hotel and concentrate just on her event. She even asked if she could turn off her cell phone and just relax, I replied "of course". Funny she would ask that.


When Emily was only seventeen months old I found a tiny news article regarding a pageant at a local community center. My family and I gathered up an adorable little outfit and decided to enter Emily in the event. In true Texas tradition we flaunted our pretty child (lol). We were so proud that Emily won the entire preliminary pageant and advanced to state. Here she is trying to figure out what this trophy was.




At state she was tiny but she got up there in front of the judges and blew kisses, turned around, and danced without being prompted, without makeup, without anything but her personality. Here is a picture of Em loving the stage......she has been a ham ever since. (She was an Anne Geddes angel)





 From state she advanced to nationals and from nationals she won a cruise that led us to Disney world...no I am not joking. She loved the stage. She ate it up, and she still does.






I took her out of pageants for years because I felt like they were concentrating more on the outer beauty vs the inner beauty. Now that she is old enough to make her own decisions I have left the entries up to her. We selectively choose pageants that concentrate on events she enjoys and platforms she endorses. I am proud to say that Emily participated in a pageant this weekend called true beauties and she did very well! She won a supreme, $350 in cash, a crown, a sash, and most important she had an amazing time. The pageant even offered a "pretty in pink" party on Saturday night. They even had DYED pink ponies for the girls to ride, pink little bunny rabbits, and a candy bar full of pink candy. Emily giggled, she glowed, and she had a good time. I was so happy she let loose.




Emily won "jackpot best hair" can you see why?


Here is Emily right before she went in for interview


Em would do a pageant every weekend if I could afford it, but we have to choose carefully what we do. We have discussed her doing Miss Teen Texas someday. I believe she can make that happen and she has an excellent platform to stand on. Pageants get a bad wrap some times but I guess it's like any sport. There are good and bad people in them. Our amazing nurse even said "this isn't what I expected at all" this weekend. He was so sweet and split up his shifts to make sure we had extra time with Emily. Mike really got into everything and was an AMAZING help this weekend.


Jude decided he loved the feather pillows at the pageant hotel. He nestled in to them and went fast to sleep. He only woke up three times to be re-positioned...both nights!!! Once we put him in his new spot he went fast to sleep. Maybe he needed the change of scenery? Maybe he needed some times with his sister? They both slept in an adjoining room to us in their own beds. The hotel was amazing and gave us a comp'd room for the kids because of all Jude's medical equipment. I highly recommend to Marriott!





Emily liked her feather pillows too




Once Emily was at home she quickly shed her "Diva" appearance. I explained we need an Emily's Smile Boxes for a little girl that was battling cancer. Emily spent ...........thirty minutes upstairs putting that box together. She wrote inspirational sayings all over the box and filled it full of the best items she had on hand. She has such a caring heart.

Jude threw up several times at the hotel but he is really limiting his vomiting to about once a day. Despite the vomit the specialist informed us that Jude has gained two pounds. So Jude is now going on a diet again. Overall he looks very good and is being a really good boy. The nightly routine is still working and it seems his breathing treatments are helping with his sleeping.

Also, I finally got a car this weekend. It wasn't the minivan I wanted but it's an SUV and will serve it's purpose for a few years. Once Jude advances into a large wheelchair I should be able to afford the minivan we will need.
Hope you enjoy the pictures.

Thursday, March 17, 2011

Jude's routine, and a big helper with Emily's Smile Boxes

The new routine is still going strong. Jude did very well going to bed last night. He cried out once before he fell asleep, but soon settled down when I came in and talked to him. He fell asleep giving me little smiles. Emily felt much better last night and is currently with Mike on her way to hotel to have a lesson for this weekend. He is so good to her, he just drives her everywhere she needs or wants to go.

So next week is full of appointments for Jude. Tuesday he is having a swallow study to see if Jude will be able to eat be mouth in the future. He also has an appointment with his GI doctor on Tuesday. Wednesday he has therapy and Friday is his sleep study. Also next miss thang here is getting back on a diet. I have been eating terrible lately and I cannot afford to gain weight. I must get back on a regime.

So a long awaited announcement. On Wednesday March 30th we are holding an Emily's Smile Boxes party at her middle school. We are putting together 200 boxes to benefit Children's and Scottish Rite. This is the first party where someone from the Kidd Kraddick morning show will be in attendance. We have been in talks with them since 09 about partnering with Emily's Smile Boxes. We don't know the extent of the partnership or the help they will give us yet, but having them in attendance is a huge stepping stone. They have the ability of making Emily's dream of taking her boxes nationwide a reality.  The show will announce more about their help when everything is finalized. We thank them with all our hearts for their consideration and interest.

Wednesday, March 16, 2011

We are all Pookers!

I have been working on getting Jude in a routine on going to bed. I think we use the excuse he is special needs to let him get away with to much. So lately between 9 - 9:30 he gets all his medications and his breathing treatment......IN BED. Then after that we tell him goodnight, shut off the lights, and he goes to sleep. Last night he slept fairly well. He would wake up wanting to be repositioned, but he quickly fell back to sleep. Well about 4:45am Mike springs from the bed at lightning speed. Have you ever seen the cartoon with the cat that is so scared it's hanging from the ceiling by it's claws? That would have been ME! It scared me to death. Mike screamed "JUDE IS PUKING" while running to Jude's room. We don't use the poliete word throw up anymore. So we went running to his room......but Jude was fine. So Mike looked perplexed and said "is it the cat" looking up towards our loft. Then the tale tale sign of .......it was Emily. I ran upstairs to find her on her hands in knees in the loft in misery. She didn't even make it to the bathroom. I am hoping and I don't think it's a virus. She has such a sensitive stomach and since we normally eat fairly healthy she gets ill when she eats bad. She confessed to lot's of junk food yesterday. So I cleaned and scrubbed the carpet in the loft, put Em back to bed, and walked downstairs to find Jude wide awake with Mike. Mike in Jude's voice said "Momma I didn't know sissy was a pooker?? I am a pooker, Sissy is a pooker, we are all pookers" and then yep Jude puked! lol. So our day started off with a bang. Helllllllllo Wednesday.

Tuesday, March 15, 2011

A Jude update.

It seems that after Mike comes to bed in the wee hours of the morning I am on high alert for Jude noise. I have now decided that I wake up at every single sound Jude makes. So last night when I had gotten up to Jude wanting to be repositioned for the sixth time I was a bit on edge. When our cat Scooter clawed at the front door to get in a few electrical sparks shot out my eyebrows from being so irritated. So I let the said cat in only to have him want right back out once I laid back down. I then grabbed his furry booty, put him in the garage and shut the door...........only to have Mike's dog Lady start he consistent barking at our back door. This led to World War III that was played out in my bedroom this morning with nurse Charlotte in the other room. I was ready to get rid of animals, and eliminate stress. Poor Charlotte heard us yelling ... ugh! Good thing Em was at her cousins and Charlotte probably gets it. Mike and I have since moved on and found more important things to concentrate on.

Jude was very clingy last night and really didn't seem himself. Charlotte said he was having the same problem this afternoon. It seems tonight is going to be no different. I think Jude is cutting molars and he is NOT a happy camper at all. Jude is still throwing up but it seems to be limited now to about 5-6 times around 6pm. It also seems to be in direct corelation to Jude trying to go to the bathroom. Odd how our bodies work when our brains don't work correctly.

I am taking Friday off this week. I need to take care of my car situation and then we are going to Emily's big weekend I mentioned. She is very excited.

Monday, March 14, 2011

Brother and Sister

Last night I was trying to get Jude's medications ready, his breathing treatment set up, and his food line started. Jude did not want me to put him down or he was start getting fussy. So Emily helped me out and when I came back in from getting everything ready this is what I found.  (Forgive Jude's lil belly they were in their Pj's)


video

I thought it was very sweet. He loves Emily very much.

A quick prayer for Delaney's family please. I mentioned her fight with cancer the other day and the little girl earned her Angel wings last night. She may be in a better place but that doesn't make her mothers pain any less real.

Saturday, March 12, 2011

We move at the same pace....

Jude actually slept pretty decent last night. He woke up three times to be repositioned but he quickly went back to sleep. Our nurse Alan showed up at 7am but I had difficulties falling back to sleep. I laid there awake while I listened to the sounds of the morning. Suddenly I heard Jude crying very loudly and the Glo-worms shiny face flashed through my mind. I threw my sheets off and jumped out of bed as quickly as I could. I ran into the living room with my arms waving saying, " NO  he hates the glo-worm". Sure enough Alan was trying to console Jude and was playing the glo-worm right in front of him. Jude was in a full throw down hissy fit. Poor nurse Alan had no idea and I could tell he felt bad. I explained that it was my fault because I forgot to pick the worm up off the floor and put the toy up in a place where no one could find him.

I then had a Scentsy party later in the day about an hour away. My friend Fleck went with me and she really kept me company on the long drive out to the house. I am so very grateful to those that have offered their homes for Scentsy parties to help me out. I also thank those that order on a regular basis. I love selling Scentsy and meeting new people.

When I got home Jude was throwing up again and continued to throw up for a bit. Mike and I seem to be rather used to the routine of Jude throwing up. I hate that Jude gets sick so much in the afternoons and I hope that someday Jude won't have to deal with that issue. I remember saying, "Come on Jude I just walked in the door from work...give mommy a break" but then I stopped myself and issued my own quick reality check. It's not Jude's fault that he throws up and I am sure he hates it far worse than I hate cleaning up his puke. The rest of the night he was very smiley and such a good boy.

Tomorrow we meet with the hotel in regards to the pageant I am holding called Regal Princess. Mike and I are both very excited to iron out the final details regarding staging, special guests, and more. I am so thankful we have been given the opportunity to reach others through community service and through events Emily loved.  

This weekend I remembered how much I really love my husband. I HATTTTTTTTTTE my personal pictures lately. I feel fat and gross, but he loves me the way I am. He hugs me, he compliments me, and he encourages me. He is working hard to make our lives turn around and become easier. I love him dearly. As I mentioned above I noticed tonight that Mike and I move in synchroniazed movements in regards to Jude's care. I can grab the medication for Jude's breathing treatments while Mike instinctually grabs the mask and places Jude in his upright chair. We then flow as we fill syringes with medications, pour cans full of formula into feeding bags, and position Jude into appropriate positions for sleeping. We can read each others movements. He knows when Jude needs to be held, when he needs to be turned over on his stomach, and I know the same things. Although, Mike also knows when I personally need attention, when I need to be left alone, and when I need time to sleep. Mike deserves a lot of credit and we are a good team.

I hope everyone is having a good weekend.


Friday, March 11, 2011

Jude is actually afraid of.........

Throughout Jude's life I have wondered if there is anything that he is truly afraid of. We know  from prior situations that Jude is truly a stroke victim caught in a body that won't respond correctly. You can tell Jude wants to talk, walk, or just move but his body just won't cooperate. So I have always wondered if Santa or other childhood images ever scared Jude, and he failed to let us know. Well tonight I got an answer. I apologize to Rachelle and Docia but Jude.........is very very scared.........of the GLO-WORM!

I took his cute little blue glo-worm out of his toy bin and nestled it under Jude's arm as he was going to sleep. I switched the music on the toy to play for a longer period of time and I left his room thinking Jude would drift off to sleep. Soon I heard him ...... not just screaming, but bawling. I raced into his room and scooped him into my arms consoling him as much as possible. Mike made random funny rude remarks about how Jude expected the norm where mommy held him until he fell asleep. So I chalked his cries up to wanting mom and nothing more. Although I soon began to notice that every time I put his gloworm next to Jude his bottom lip would pucker out and tears would begin to fall from his eyes. I began to wonder, "does he really have an aversion to this toy? Is his brain working to that capacity". I called Emily over to be my witness and when I placed the cute little worm with it's glowing face and singing nature next to him, Jude began to pucker out his lip in sadness. Emily had her interest peaked and ran to tell Mike to watch our new found discovery. He came into the room saying, "I have never found anything that Jude responds to more than once". Well now you HAVE! Jude immediately began to pucker up his lip in sadness and Mike looked surprised. 

We were perplexed. We wanted to throw the Glowworm far away, but another part of us wanted to show everyone we knew that Jude did indeed have normal brain activity. So I opted to take the toy show it to Jude, and throw it across the living room telling him the scary worm was gone. I told him to trust that mommy would always take care of him. He ..........snuggled into my shirt and went sound asleep. 

Jude understands a lot more than anyone gives him credit for.

a quick update

Jude seems to be doing alright with his breathing treatments. His little ear seems to be a lot better too. He is still throwing up and that is no fun. He doesn't seem to be losing any weight, but we do keep towels on hand for any given moment.

The sleep study has been scheduled for the weekend of the 25th. This will show us if he is having seizures that are waking him up, or what the issue is. We are also very concerned about hip displacement at night. Jude is wearing compression shorts, but we are going to have to find a better sleep system. He was talking to me so much last night which was so cute!!

So my heart is aching some this morning. We sent a Smile Box to a little girl named Delaney. She slipped into a coma and they don't expect her to make it. She did wake up yesterday but her future outcome is still not suppose to be good. I really feel for her family. Delaney could use your prayers. http://www.facebook.com/#!/pages/Prayers-for-Delaney/135998836419708

I also feel so terrible for the people in Japan, what a tragedy.


Wednesday, March 9, 2011

Survey says.......

Jude had a sinus infection that caused a left ear infection. My poor boy! I hate that he cannot say "Mommy my ear hurts". He would just pucker out his little lip. So he is on some antibiotics, but at least this should be a quick fix.

Jude did make it to therapy today but he didn't want to do much. Mike mimicked Jude's voice saying "Come on ladies didn't you get the memo that I am SICK!". It was funny, but sad. He has also yet again outgrown his clothes! His little jeans were unbuttoned and his belly was hanging out of his shirt. If you sat him on the couch he would look like a redneck. So it's shopping time again.

Here are some pictures from therapy today. He looks like he is saying "get away!"



Tuesday, March 8, 2011

A crazy kind of day and is the baby sick?

Yesterday I got a call from my sister that my step-mom that just had knee replacement surgery wasn't doing as well as they had hoped. She had to have a blood transfusion and pneumonia had settled in her lungs. My understanding is that this in not to uncommon after this procedure but it was still concerning to her family members. While talking to my sister I got a call from Mike that they may be heading to the ER with Jude. Thus are the days of my life, lol. Anyway, after much debate and me getting very irritated Mike decided to keep Jude on a wait and see basis. I got irritated because I felt like Mike wanted me to make the decision if he should take Jude to the ER and I was at work. I know this wasn't the case.......maybe it was just the stress of the situation that upset me. Anyway, what led to the contemplation? Jude had slept a whole lot yesterday and was very whiney all day. Any time Charlotte would touch his head Jude would pucker out his bottom lip and then cry and cry. She said he just wasn't himself at all.

When I got home Jude was asleep again and slept until about 8pm. This is a lengthy nap for Jude and I was growing a bit concerned. When he woke up I took his temp and it was a bit elevated, but not much. He was also all smiles......so we were perplexed. Jude went back to sleep for bed time without little issue and slept until 3:30 this morning. When he woke up he was pretty congested but he never threw up. Once Charlotte got there I walked in to give Jude kisses. I grabbed his little face and suddenly his bottom lip puckered out. I said "No no Jude don't cry mommy is sorry". His lip quivered but he finally stopped before he actually began to cry. So the question is........

1. Is the new asthma medication giving him headaches? I am a bit doubtful on this because this morning when I grabbed his face he had not had his breathing treatment yet.

2. Does he have an ear infection from all his congestion?

3. Does he have another lung issue going on?

4. Is he battling the CDIF again because we are seeing some less than cheery diapers.

So little Mr Jude is heading to his pediatricians office today at 10:30. We know he has been battling something on and off for about two weeks now. So hopefully they can give us some resolution.



Monday, March 7, 2011

See I can play with toys!

I hate that this picture turned out fuzzy, but this is Jude playing with his toy. Some of our friends got this for Jude when he was tiny. He actually plays with it! He does his best to get his hand up there to push the buttons to make the music play. I am so impressed he can do this. I wonder how he would do with music therapy?



Jude was up and down again last night. We are looking into the Leckey Sleepform http://www.leckey.com/products/#sleeping-and-lying. Has anyone had any experience with this product? It's suppose to help children sleep better. It is also suppose to help prevent hip displacement which looks to already be a problem with Jude.

He woke up pretty upset this morning, but I have heard a report that he is very happy now.

See my hair cut?


My new breathing treatments

Sunday, March 6, 2011

Sunday Funday

Last night Mike gave Jude his breathing treatment without a nurse for the first time. Jude sat with his little mask on and took in the medication. Soon after........Jude wanted to play and play and play. There was no going to sleep for the little man all hopped up on asthma medication. So we learned that we need to give his breathing treatment at about 8 at night so it will have enough time to wear off some. So Jude was up and down the entire night, but it's so much easier to handle when his nurse gets here at 7. Mike and I were both able to get a lot of sleep this weekend.

I had to go into Dallas today so I picked up Emily early from her dad. We spent the afternoon roaming around the Galleria. We only bought a few things from Lush, which is my favorite bath and body store. Other than that we just admired all the pretty items in the store fronts. We laughed and had a really good time together. I really love those days with her. Once I got home Jude was all smiles whenever I gave him hugs hello.

Emily has another Emily's Smile Boxes party at the end of March. We are holding this one at her school and are putting together 200 boxes. We are suppose to have some members of a radio station there and I am hoping it all comes together. We are going to plan another party in June for our summer box party. I will keep everyone updated on the exact date.

Saturday, March 5, 2011

Throw up and Texas budget cuts

Jude started his breathing treatments this morning and he did very well. His temp is down and he seems to be feeling much better. I really think the reason Jude overcame this sickness without a hospital visit is because of his loving nurses. The repeated CPT, saline, cleaning out his nose, and alternating medications really helped him. We are very lucky that we have them. With that being said our nurse Alan brought the information from our home health care agency showing the proposed budget changes for the state of Texas. He also acknowledged they have already cut nursing reimbursements by 2%.

The house budget proposal (HB 1) suggests a 19 percent overall cut from the 2010-2011 budget. I understand this has to be done due to our huge deficiet, but this is going to greatly affect education both secondary and elementary, prisons, transportation, health and human services...including foster care, and higher education. I still believe placing Casino's in our state would be a better option than all these cuts.

Let's discuss the section that will truly affect us.  Medicaid provides 3.5 million Texans with access to health care inslucing nursing, and long term care. There is a total of 3.8 billion being suggested to cut for health care providers...... that means many doctors that currently take medicaid, won't anymore. Texas medicaid funds would also not receive funds needed to replace federal recovery act dollars (nursing). The 10 percent rate cuts proposed for 12-13 are in addition to the rate cuts already made in 2011.  According to the Texas Medical Association, Mediaid rates are so low that only 42 percent of physicians in the state will accept Medicaid.  In 2000 67 percent of physicians accepted Medicaid. In addition to the cuts that would affect us there will be cuts to Child Protective services that will affect others I know.  In CPS a 7.4 percent overall cut would not fund caseload growth for foster care or adoption subsidies. Client services would be reduced, and 750 staff would be eliminated.

You can actually read on the HB 1 for the full list of all the programs that will be affected. It seems very large cuts are being proposed for the elderly, and for the special needs groups. I understand that many people feel they do not need to fund taxes to care for others. Although, these are people that are invalid and need help, not people just living off the system.

As I was typing this Jude turned into old faithful and throw up came out his mouth, nose, and went into his hair, eyes, and more. Jude was turning blue, and our nurse was suctioning him to keep him from aspirating. It was the worst throw up we have seen yet. So now we have to wonder if this violent episode is related to the medication in the breathing treatment. Thank goodness we have our nurse here, I sure hope we don't lose them. These proposed cuts means our nurses will make less money...which doesn't seem fair.

I am also concerned about the cuts to education. I am sad we have gotten to the point that we have to cut so many programs. Texas already spends less per person than most other states.

If you haven't written your congressman (or woman), state reps, and or state senators I request you do.




Thursday, March 3, 2011

breathing a little easier.

I am better. I sometimes have to have a bit of a melt down and then I realize what's important. I am blessed we have good doctors that can care for Jude. Jude didn't ask to be a member of the special needs club, and we have to help him the best way possible. He is breathing a bit easier tonight, and overall seems happy.

I am very worried about all the possible cuts pending for the MDCP program. I am really not sure what we would do without nursing, and Jude's medicaid. So I wrote letters again all over the place today, and I will wait to see what happens.

Jude's nebulizer will be here tomorrow by noon, and he will start his new medications. I plan on calling the doctor myself to find out his exact diagnosis. Mike said he wanted me to talk to the doctor because he thinks he forgot some of the information.

I went to Emily's open house tonight, and I am just so very proud of her. I will post more tomorrow!!!


Jude's doctor update

Jude's pulmonologist visit went alright. Mike said the doctor informed him that Jude's lungs sound clear so they did not need to do a chest X ray. I am not sure this was the wisest decision since Jude has a history of doctors making this decision only to bite them in the butt a few days later. Anyway, he did say that Jude's chest wall is weak, and he prescribed breathing treatments twice a day. Right now there are no stop dates on this new prescription. So basically the stroke affected the brain which affected Jude's muscles which in turn caused this issue. So it just means Jude is more susceptible to getting lung infections or aspirating.

He also said the doctor basically told him that we will most likely continue to have issues with Jude throwing up, and waking up during the night. He said trying to treat those issues could cause more problems in the long run rather than just dealing with it. He then said all things considered the situation is what it is, and it could be a whole lot worse. He also mentioned that all things considered Jude looks very good. I know this should make me feel better, but it really annoys me when doctors say "it is what it is". Yea thanks I KNOW THAT, but it doesn't make the situation any easier.

Mike said he thinks I have moms intuition that runs about 24 hours ahead of any illness Jude has. So he thinks I get very annoyed when people and doctors don't listen to me because I really know when there truly is an issue. In this circumstance I was right again that this isn't just allergies because Jude is now running a temp. He is either fighting something or aspirated and it hasn't fully reared it's head yet. I am hoping it's just a bit of a cold that will quickly go away.  Again, I think having Charlotte there with Jude is making all the difference. Yesterday she did CPT, kept his nose clear, and administered medications around the clock. I am hoping that her help will clear whatever Jude has up quickly. Now I am wondering ......... since Jude already has trouble sleeping, what in the world are two daily doses of Abuterol going to do to him? Oh, and the doctor did say that having Jude sleep on his sides is better for him, and we will continue to need to reposition him at night. I am hoping that at some point we can get a night nurse a couple of days a week.

Look I know that our situation could be worse, and I am thankful it's not. With that being said I was really hoping we would find a solution to Jude not sleeping at night. It's been years of this, and I am tired.  Although, in the back of my head I knew we would have to keep repositioning Jude for various reasons. No one can lay in the same position for hours without risking blood clots, etc. I guess I just never really realized this is it, this is the way it's going to be. If I stayed home I think the lack of sleep would be easier to handle, but working full time wears me out. It's to the point that an extra 15 minutes of sleep when Charlotte gets there makes my day.

Anyway, off my boo hoo fest, I will get over it and march on as usual. Throughout his current coughs and aches Jude is still smiling. He is my little Juders, and I love him very much.

Here is Jude last night laying on his wedge. You can tell he is a bit sick.


and here is Em showing off her new feather in her hair she got courtesy of KTS Hair Studio!

Wednesday, March 2, 2011

a quick lil update

I got limited calls today on Jude until the end of the day. It seems his temp has started rising some. Once I got home Mike informed me that Charlotte did hear some wheezing in Jude's chest. Luckily the pulmonologist called to schedule an appointment for tomorrow at 10:30. I informed them of Jude's recent issues, and they are going to do a chest X Ray at the office. Jude is currently sleeping, which is good for him, and once he wakes up I will evaluate him again. If his situation is worse we will take him in tonight. Little Jude amazes me that he can be fine one minute, and the next he gets sick. Hopefully he will be okay until they take a look at him tomorrow.

So I am sitting here typing and an interview with Charlie Sheen just popped up. I have avoided most of this mess he calls his life, but man.......he looks BAD! It's like watching someone self destruct. I hope he can get help. shooo!

Update

Thank God for Charlotte. She got there at 7:30 this morning. I stumbled into Jude's room to talk to her about the early morning hours, and then stumbled back to bed to sleep for thirty minutes. My family will laugh at that statement because I have always said "I want all my minutes" regarding sleep. Emily (as usual) got herself ready, made her breakfast, and shuffled out the door to the bus stop. She is such a wonderful and responsible kid.

Charlotte acknowledged Jude's cough sounded pretty bad, and she put his pulse ox on. It hovered from 94 - 96 while I was in there. She spent a lot of time cleaning out Jude's nose, and said he had a vomit obstruction (gross) which could be causing some of the issues. She also said he is very congested, but that his lungs currently sound clear. She also agreed that he isn't running a fever yet. So she suggested that we watch him throughout the day and see how he is doing.

So what is it? Who knows. We know from the past that when Jude does this at about day three he is very very sick. Although, we haven't had a nurse there with him as many hours before. I am hoping that her attention in suctioning, CPT, etc will help this issue from escalating. She made a good point.......that if we go to the ER now if they don't see anything in his lungs they will try to send us home. It's sad but true. It might be croup, but Jude seems to have a repetitive pattern with this respiratory issue. I went into the ER last time just determined he had croup but it was the beginning stages of pneumonia, and he had streaks in the bottom part of his right lung.  We are pending a pulomonlogist referral, and maybe he can shed light on this a bit more.

For now we are hoping this is something that will pass quickly, but if it doesn't we know the right path to follow and to follow it quickly. Thanks so much everyone for the great advice, and the prayers.

Hello early AM.

Well it's 3:30am and I am up...again. This is one of those times I cannot go back to sleep after Jude has woken up. The bad thing is it seems Jude is sick. Last night we were sitting on the couch and just suddenly Jude started bark coughing like a seal. He wasn't running a fever, but his cough sounded terrible. I took him to bed with me, and little Jude fell fast asleep. It's now early in the am and he just woke up doing the same thing. He is still not running a fever but the blood ox shows his reading to be 94. The blood ox machine isn't always reliable because Jude crunches his toe, but his toes were very relaxed, so therefore I am a bit concerned. I am hoping he has not aspirated on any of this vomit and has started to develop an infection. I just gave him some Motrin to relieve his discomfort and he went back to sleep after coughing for a bit. The morning will host a trip to the dr or the ER depending on how quickly his new pediatrician can get him in.

Tuesday, March 1, 2011

A doctor's visit

I failed to post yesterday because I was FREAKING BUSY...lol! I was so busy at work that 5:30 seemed to arrive in about 20 minutes, now that's a good day! Also, I was waiting to hear what the results were at Jude's doctor visit.


Jude, Mike, and Charlotte made the long treck out to Texas Child Neurology and Plano to see our beloved Dr Riela. There were comments made about Jude's height and how big he has gotten. Jude then saw his great neurologist who proclaimed that Jude looks the best he has ever seen him. He said he has a couple of concerns about Jude's sleeping issues. He said they are one of the following...


1. Sleep Apnea....which may be a possibility because Jude snores, and this is a huge concern.
2. Seizures
4. Spasms or startles


It seems that Dr Riela is leaning more towards startle reflexes. Jude's startles are more exaggerated and look like more like seizures than most baby startles. So Dr Riela suggested a 24 hour sleep study for Jude. The doctor said there is a possibility Jude is seizure free and we are mistaking the startles for seizures. He said either one could be waking him up, but seizures at night are not a good thing.  Either way they will be adding medication, or adjusting medication. He said if they are startles when he wants to give Jude a medication that will stop them, and help him sleep. He said lack of sleep can induce seizures in him, so we need to get this situation handled. Mike then told me about the effects on the parents. He was told that parents that go this long without proper sleep start seeing ill affects on their health. Their body starts breaking down, organs start swelling, stomach issues arise, and etc. So I think they want to get this remedied for all of us. So Jude will be going for his 24 hour sleep study soon.

Jude was up and down from 2am on last night, so it was another restless night. I wanted to quit mommy duty for 48 hrs about 4 am this morning.

It will eventually all work out I am sure of it. Now back to work, and back to hunting a vehicle.