Toby's First Thanksgiving

I hope all of you had a wonderful Thanksgiving. We did have a wonderful time visiting with Bruce's family. The only mishap was I forgot the Mic-Key tube extension that hooks into Toby's Mic-Key button so he can eat (and we were 2 hours frome home). My sister-in-law, who is a nurse, tried to find one at the hospital where she works at, but they weren't able to. So, I called our durable medical equipment company and the on-call people delivered one to Akron (from their local branch)..Toby's food started just a few hours late! Oh well, I put an extra one in his bag. I learned my lesson.

The other thing I wanted to share was on Thursday I was just overwhelmed again in thanksgiving to God for his mercy and love for us - for the miracle that Toby is. The miracle that he is still alive, that he is growing, doing well, even sitting up! I heard this song by Stephen Curtis Chapman, and for those of you that know me well, know that music is very important to me and God often uses songs to speak to me. This song is called "Carry You to Jesus" and it is written from the perspective of someone wanting to pray for someone else and carry their burdens. It made me think of all of our prayer warriors, who daily and sometimes hourly lift us up to Jesus and it made me cry out to God in Thanksgiving for all of you. I just wanted to share the words (see below). It's on Stephen Curtis Chapman's CD called Declaration - I'm sure you can "google" it and hear a sample or hear the song.

"Thank you dear God for providing us with prayer warriors and allowing us to as Hebrews 4:16 says,"come boldly unto the throne of grace to find grace, that we may obtain mercy, and find grace to help in time of need"

Carry You to Jesus

I will not pretend to feel the pain you’re going through 
I know I cannot comprehend the hurt you’ve known 
And I used to think it mattered if I understood 
But now I just don’t know 

Well, I’ll admit sometimes I still wish I knew what to say 
And I keep looking for a way to fix it all 
But we know we’re at the mercy of God’s higher ways 
And our ways are so small 

But I will carry you to Jesus 
He is everything you need 
I will carry you to Jesus on my knees 

It’s such a privilege for me to give this gift to you 
All I’d ever hope you’d give me in return 
Is to know that you’ll be there to do the same for me 
When the tables turn 

And if you need to cry go on and I,
I will cry along with you, yeah 
I’ve given you what I have but still
I know the best thing I can do 
Is just pray for you 

I’ll carry you 
I’ll take you to Jesus on my knees

Love Our Pulmonologist

I just have to say that we really like our Pulmonologist. He's such an excellent doctor and really seems to have a grasp of Toby as a whole, not just his specialty area. We consulted with him about the new medication and he assured me that the benefits far outweigh the risks, so we are starting the new medication tonight.

The boys come home tomorrow night - we're excited to see them, but it has been a very nice relaxing week for us.

Nov 19, 2007 8:52pm

Toby is doing pretty well. He's been on and off the oxygen lately, but I think that is just going to be the nature of things this winter - cold and flu season. He is on the new medication and seems to be doing well with it. The boys are back home now, and it's great to have them home. The break was nice too! U of M did lose on Saturday, which we will mourn..but Sunday night, the Red Wings beat the Blue Jackets in a shoot-out and one overtime. Bruce and I were able to go to the game; we had great seats, and enjoyed our date night out. Our one prayer request right now - and it may seems early, but we're praying that Toby stays healthy for a trip home to Michigan for Christmas. He's almost a year old - it's hard to believe.

Have a Happy Thanksgiving! Love, The Holts

Starting Ditropan?

We went to see the urologist today as a follow-up from Toby's last kidney ultrasound. It was a long appointment and kind of frustrating because we waited for over an hour before we saw anyone. Most of our questions were answered and we have an appointment to see the nephrologist in December. We will see what he has to say about the calcium in his kidneys. The urologist also wants to start Toby on a new medication called ditropan. This is one that kids with SB are typically on. It is supposed to increase bladder fuction, which is great, but I'm a little bit concerned about the side effects of this drug. It can dehydrate, thicken secretions, cause constipation, and increase body temperature - all of which would be really bad for Toby. I have a call into pulmonary to see what his opinion is. My greatest concern is the dehydration - this would not be good for his trach and lungs. Obviously he may have no side effects at all, so we can always try it and then take him off of it, if it's bad. We will see what the Pulmonologist says.

Nephrologist and Oxygen

Toby continues to do well sitting up in his bumbo seat. He's been on some oxygen when he's sleeping the past few days; I think it's just going to be the nature of things this cold/flu season. He did receive his first synagis or RSV vaccination last week. He will get these monthly during this season because of the major health complications that come with getting RSV, which is a major respiratory virus.

Conor and Garrett are going home with Grandma and Grandpa Fabian tomorrow for a visit; it will be a nice break for mommy and will allow for Bruce and I to have some time together alone and with Toby. Wednesday, Toby will see the urologist. It's a follow up from his renal (kidney) ultrasound. They are finding nephrocalcinosis or calcium in his kidneys; he's actually had calcium in his kidneys since birth. They're not acting like it's anything major, but the Urology Nurse Practitioner did mention that they might refer us to a Nephrologist (a doctor that specializes in kidneys) to see if we should be concerned about this. He does not have kidney stones; so we will see what happens with that.

Gratefulness for His Unspeakable Gifts

Today is a day of Praise!! (This journal entry is long today! :)

Toby took a really LONG afternoon nap, so he was in a great mood tonight. Our nurse put him in the Bumbo seat and I was just amazed as he sat up like a big boy. His head would fall back, and then he would pull himself back up to midline and sit up. I took a short video.

Lately I have just been amazed at the blessings of God. I found this verse in Psalm 31:7 "I will be glad and rejoice in Your mercy, For You have considered my trouble; You have known my soul in adversities," and Phil. 4:5 "Rejoice in the Lord always. Again I will say, rejoice!" I rejoice over the milestones that Toby is starting to accomplish and also the relationships that He has put in our lives. Our friends the Weise's and their son Evan; we have been friends long before we were married, and God orchestrated Evan to be on a vent. 4 years before Toby. We even share respiratory supplies! :) I am thankful for the new friends I have made on a Yahoo group that I'm apart of - Parents of children with SB and adults that have SB. I am also thankful for the family and friends that continue to stick by us even though our lives have changed dramatically. Many could have very easily walked away. Just recently I reconnected with a friend from college who also has experienced tragedy in her life. Some of the same verses that spoke to her during their time of grief has been some that we have also treasured. Psalm 40:1-3 "I waited patiently for the LORD; And He inclined to me, And heard my cry. He also brought me up out of a horrible pit, Out of the miry clay, And set my feet upon a rock, And established my steps. He has put a new song in my mouth - Praise to our God; Many will see it and fear, And will trust in the LORD."

God is such a personal God in that, I know that with my personality I wouldn't have been able to handle Toby as my first child..I'm glad we knew before he was born, so with my Type A personality, I could plan..but God has also continually used that to teach me that He is always in control and I have to trust Him daily. I could go on and on about the ways that God has tailored and planned, Yes planned for us to have Toby at this point in our lives with brothers to encourage him and family/friends to love and support Him and us. Praise be to the Lord for HIS unspeakable gifts!! Have a great night.

Rolling Over and Myelo Clinic

Toby's waiver is resolved; I was on the phone many many times the last few days, and several times while at Myelo Clinic on Friday. They called and said they fixed it, and on Saturday I ordered one of his prescriptions that is only covered by Waiver just to check and it went through! Thank you for praying!

His clinic appointment went pretty well. The doctors, Physical Therapist and Occupational Therapist were commenting at how big he is and amazed at his progress holding up his head, etc. The most questions we had were for seating and mobility...what might be the next step as he gets bigger? Thankfully our home PT came with us and was able to ask a lot of questions about some of the devices we are using to get him to sit up and also to straighten his legs to stand. The Physical Medicine Doctor who prescribes wheelchairs, braces and such said his feet still look great, which means he won't need any AFO's yet (Ankle & Foot Orthotics) and the PT at clinic also said that braces would weigh his legs down, so we will wait on this. To be completely honest meeting with the Physical Medicine doctor wasn't encouraging. She mentioned how as Toby gets older he may not have the mental capacity to use a self-propelled wheelchair, etc. Of course she doesn't know Toby like we do, but after we left, I was analyzing every move he made trying to see if he's going to grow up and not be able to communicate with us or have major mental difficulties. I know that many of our dear friends deal with this every day, and I know that God will give us the grace to handle this too, but right now I just don't know if I can handle that. God asked me once again to trust HIM and reminded me to take it one day at a time! Toby also had a renal ultrasound and we will see the urologist in a week and a half for a follow-up appointment.

On a happier note this weekend my grandparents (My moms' parents) came for a visit. We had a wonderful time. AND on Saturday, I had Toby propped on his tummy propped up on a rolled blanket. We were in the kitchen cooking dinner and then I look and see that Toby is initiating rolling over ALL BY HIMSELF. I went in and unhooked his ventilator, which was getting in the way, and there he went. HE ROLLED OVER! Then he did it 3 more times. Each time I needed to be the motivation to roll the rest of the way, but I didn't have to help him, I just had to be something to look at.

Lastly, I posted some new photos of Toby in his costume and the boys. Conor was Sully and Garrett was Mike from Monsters Inc. The boys had fun trick-or-treating with Grandma and Grandpa Holt.

Always Something

Hello - Please pray for Toby's HomeCare Waiver right now. We thought everything was resolved and now we're having issues with it again. They don't have him receiving nursing duty services in their system, which means our nurse is working and not getting paid - it is NOT because he doesn't qualify, but because someone hasn't renewed him in the computer system.

Also, we don't think it's anything major, but Monday Toby was so strong and yesterday and today Toby has been very floppy. He can't sit up; his head control is floppy, etc. We aren't sure if he's just going through some growing so all of his energy is going towards that or if it's because of his cold. I'm a little concerned, but we're not calling the doctor just yet. We will see how he does the next few days.

Bumbo Seat

Hello everyone. Toby is doing pretty well; although now he has a runny nose. We're still waiting for that first tooth to pop through. Toby's OT came today and her goal was for Toby to sit up in his Bumbo seat without help by Nov. 1st and he did. He is making a lot of progress (I'll try to take some photos soon). The new night nurse is starting tonight. It's always a little difficult to transition with a new person in your home. I'm looking forward to getting some sleep again (so is Bruce!). I was able to get away this past weekend to visit with some girlfriends from college. It was very great to see them. Have a good week!

A Few Milestones

I had to add 3 new new photos today. The other day Conor was laying on a pillow next to Toby, and they were having a fun time "talking" to each other. The new photo on the front page is of Toby having tummy time on his wedge. We are very proud at how he is learning to really hold his head up high and for extended periods of time. He is also drooling like crazy - no teeth just yet (if you look closely you can see it!!!) Toby is also learning how to move air around his trach and up over his vocal cords. Last week he was making noises for Grandpa Fabian (my dad) on the phone. It is great to hear his voice again.

Toby is still on oxygen, and he is now being treated for his trach infection. He is acting fine, though - very happy again and smiling all the time! We're praying by the end of the week, he won't need the oxygen anymore.

No More O2 Needed

Toby seems to be doing much better today. He does have an infection in his trach, so he will be on medication for that starting tomorrow. (They did a trach culture on Friday while at the ER). I shut off his O2 just a little while ago, and he's not needing it for right now, we will see how he does as the day goes on. Thank you for continuing to pray. 

Being Sick - Trip to the ER

Last night and today Toby is still needing lots of oxygen to keep his saturations up even when he's awake. We ended up taking him to the ER today because something just doesn't seem right. They did a head CT to see if it was his shunt, a chest x-ray, x-rays of his shunt and tubing to see if it was kinked. They took blood, etc., etc., etc., and he's fine. Nothing is showing up. The minute we shut off the O2, though , he desaturates and so the conclusion is that he has a virus, even though he has no runny nose or cough. We are back home now, and we will keep him on O2 through the weekend; if things still seem fishy, and he continues to act strange, we will pursue more with his shunt next week. Sometimes a shunt can be failing and it doesn't show up, even with all of the tests they did.

A New Night Nurse

Well, we interviewed the nurse last night and really liked her. The best part is the nights that we need her (Sun., Mon., and Wed.) are the nights she needs, so we don't have to move around our other night nurse (who we love!)

Toby has a bladder infection "sort of"...It's kind of hard to explain, but he had bacteria in there, but the count wasn't high enough to indicate an infection. They're still treating it with an antibiotic that is specific to just the urinary tract, so it doesn't kill off good bacteria in his body. Toby just isn't acting like himself, though. He's actually crying today (he never cries unless there's something wrong); he's serious (he's always smiling), and he just seems out of sorts. Please pray that we will have a clear picture of what it is - there are so many things to consider - respiratory problems, a cold, teeth, the shunt malfunctioning, among many other issues, so we will see what happens. Thank you again for always keeping us in your prayers and caring for us so much!

Odds and Ends

We might have a possibility of filling our night nurse position - we're hoping to interview her some time this week; we'll keep you updated. Toby also might have a bladder infection again (I'm about 95% positive he does). We took a sample today and they will test it; we should know by Wednesday. It frustrates me that he will be on yet another antibiotic, but this too is in God's hands.

Lastly, Bruce and I are starting the process of looking for our next place to call home. Please be in prayer as we search for a home that will incorporate Toby's mobility needs as he gets older. We're trying to take this into consideration, which obviously limits our choices, so your prayers with us on this would be wonderful. Some days I think that our search is hopeless, but I also hear God continuing to ask me to trust HIM. He will provide, and the only way that we will be able to explain it is that God did it and not us!

Neurosurgery

Toby's CT scan went well today; It looked great. Dr. Elton (our neurosurgeon) said we don't have to come back for 6 months (previously it has been 3 months). Toby did great for the CT - just looked around while he was strapped down. We had a night nurse last night, so we were able to get some much needed sleep. No word on a nurse yet for the other nights, so please keep praying! Have a wonderful day.

Again, I just want to thank you for continuing to lift up Nathan, Ivy, and Bradlen Olin in your prayers. His shunt surgery went well.

Finding a New Night Nurse

Please continue to pray for Bradlen Olin (Erika and Carl Weise's nephew) Here is the link to this web-site so you can stay up to date. Please sign their guestbook and let them know you are praying for them; they would love to hear from you!

www.caringbridge.org/visit/bradlen

Another prayer request for us is a new night nurse. Because of some circumstances surrounding the one night nurse we had, they have taken her off of the case, so now we only have a night nurse on Tuesdays and Thursdays. We are going to be pretty tired if they don't find a replacement soon, and unfortunately finding night nurses with pediatric vent. experience can be very difficult. I know God is always in control and He definitely answers prayers, so thank you for continuing to lift us up in prayer. I'm amazed at how the body of Christ works in supporting one another.

Planning for the Inevitable

Well, our trip to Florida was wonderful! We left on Tuesday and arrived back home about 3:30 a.m. this morning. We were able to relax, Bruce and Carl golfed, we swam, saw an alligator in the Everglades, and did all kinds of wonderful things. Our hotel was right on the beach, and the weather was beautiful; I even squeezed in a run on a path by the beach, which was beautiful!!

God taught me a very valuable lesson while we were gone. When we arrived at the airport on Tuesday night I called home to say we had arrived and learned that from 7:30 p.m.-10:30 p.m. there was no electricity at our house. Before we left, I had planned for every scenario, even made a video for all of the nurses showing them how to take care of Toby, but had forgotten to think this one through. It was chaotic, the back-up battery wasn't charged, we didn't have flashlights in the house, and in the end they had to call 911. Toby was GREAT; they DIDN'T call 911 because Toby was in distress, they just needed power for the ventilator, and our generator wasn't working right. Martha and Brenda (two friends from our church) along with our neighbor and my mom problem solved and worked through it all. The Hilliard EMT and Fire were here, and provided light and generator power. This situation was EXTREMELY humbling for me. I felt like I had planned out everything, and then felt so incompetent because we didn't even have flashlights, the back-up power source for the ventilator wasn't charged, etc., etc., etc., (our power never goes out by the way). I hate asking for help, and then not only were people volunteering to take care of Toby, they were experiencing major stress while doing it. There is no way I can ever repay that. Finally, God spoke in the middle of my tirade of berating myself and questioning why God allowed this to happen. He said, because "I'm in control, STILL! You couldn't be there because you would have been able to control all of it, and intervened because you know where things are and how to move Toby, etc. Everything would have been fine, but you still need to remember to trust me, and allow me to be in control, so you had to be in Florida and learn to trust from a distance." So, then I had to stop and think about the ways He provided in this situation, and there are too many to list on the web-site today, but He did. I learned a very valuable lesson - go and buy flashlights for each room in the house, and that God is still in control -always is, even when I think that I am. Thank you, God. I am humbled by all of the help we had while we were away, something I can never repay, but I can still say thank you. So, thank you - Martha, Brenda, Erika, Jeannette, Paula, Mom, Toni, Aliena, Mareta, Lyndi, Tom, Mom & Dad Holt, and Hilliard EMS and Fire. Thank you for praying while we were away too!!

Mommy and Daddy are Going on a Trip

The big prayer requests this week are for Toby to stay healthy and things to go well while we are in Florida. Garrett indeed has quite a cough and a runny nose. Pray for everyone to feel comfortable while taking care of Toby when are regular nurses are not here. My mom will be here with the older two boys and Bruce's sister Toni and his sister-in-law Aliena will be here for Toby. It seems silly, but so far the weather forecast for our trip is thunderstorms every day; pray that we will have some sunny weather so we can relax and be refreshed. 

• Share this on Facebook
 
• Share this on Twitter
 
• Share this on Google Plus

First Trip to Park

Today we took the boys to the park and rigged a blanket to hold Toby into the swing. He loved the motion of the swing, so of course we had to take a photo of him with the nurse's phone (I forgot my camera!). Not much to update - the biggest prayer request now is for everyone to stay healthy, especially Toby - before and during our trip to Florida. Garrett has a cold and a runny nose right now and I've been feeling like I'm coming down with a cold, so pray that Toby doesn't get it. Have a great weekend!

First Sleep Study

Toby's sleep study went fairly well last night. I haven't seen him cry that hard in awhile, though, when they were gluing and drying all of those little probes with the wires to his head. He slept okay - not as deep as he usually does, but he did sleep for an extended period of time, which was good. It didn't seem like a relaxed sleep to me. He looked so funny with all those wires glued to his body. The test results are close to 900 pages long, so the doctor will take about a week to read them and then he'll send his report to the pulmonary doctor and from there we should know how well the vent is doing it's job and if they'll make any changes. I did post the new photos - some from the sleep study and then a few from his Physical Therapy today. He is doing really well pushing up and getting his head under control. Conor really helped out today with getting him motivated to roll back and forth from side to side!

G-tube is In and G-tube is Out!

Please pray for the sleep study tomorrow night. I'm feeling a little overwhelmed with trying to remember everything I need to take to the hospital for it.

Then, today Toby was supposed to be taking a nap, and he was awake - so our nurse looked in the video monitor and there was Toby lying in bed, waving around his g-tube in the air. We went in and he had a big smile on his face hiding behind his pacifier - he was laughing. The little stinker...it was kind of funny. The MicKey button has two parts where the different tubes hook into it, and the g-tube end came out. His MicKey Button is still in place, meaning he can still get his food, etc., but now we're headed to the hopsital an hour and a half earlier tomorrow night before the sleep study to get it replaced!!!

Also, Bruce and I are actually going to get away for a few days to Florida without kids!!! We're going with the Weise's and we're very excited. It's taking a lot of planning. My mom is coming to help with the older boys. A friend from church, Bruce's sister and sister-in-law who are both nurses are coming to help to take care of Toby in the times when we don't have nurses. Pray that things go smoothly, that Toby does NOT get sick, and that I don't fret while we're away. Thank you!

First Hair Cut

Toby had his first haircut today. It was getting really long and wispy. He did great, kept craning his head to see what she was doing. He looks so grown up now. He also had PT and he is doing much better with holding his head up.

Things are going well, not much to update medically. When you don't read any updates - assume everything is going well! :) He has a sleep study next Tuesday night overnight, which will be involved - just getting him to the hospital, etc. and I will be staying with him overnight. I hope it goes well, and that we both get some sleep! Have a great day.

God Continues to Provide

The results of Toby's test came back - no Hirschsprung's Disease. That's great news, it means no surgery, but he still is having many issues stooling on his own without the help of suppositories. This is very common with his disorder, but it seems strange to have issues so young. We will continue to collaborate with the GI doctor on the issue. We had a great weekend with my parents and sister. We were able to take Toby to the zoo and went for a walk on Sunday. The weather was so nice, but now it's hot and humid, so we're bound to the house again!!

The issue with the HomeCare Waiver is still in "limbo", but I've been able to get a few answers from someone at the Ohio Jobs and Family Services Department. I know they're scheduling hearings a few months out, so it may be awhile before this issue is resolved. Thank you for your continued prayers. God continues to provide for our nursing care, therapy, etc.

Pulmonary Appointment

Hello :) Toby's pulmonary appointment went very well today. His chest x-ray looked great. The doctor was a little bit concerned about the wheezing he heard in his lungs and that we hear at home, so he's putting him on another medication. The other thing we're really watching is his weight. He lost weight last week, and so we called the nutritionist and they increased his calories, and he gained it back, but we are still needing to keep a close eye on it. It gets confusing because each specialist weighs him and it's different on every scale! We just try to base it on the way we weigh him at home. The next big appointment is the sleep study in 2 1/2 weeks. The pulmonologist will be relying on this to really tell him how well the ventilator is supporting Toby. That's all for now - we're going to enjoy the beautiful weather this weekend with family. Have a great Labor Day.

Rectal Biopsy

Toby's biopsy went very well. He did great, we probably won't know the results until mid-next week because of the holiday and the GI doctor is out of town. My parents and one sister are coming for a visit this weekend, so we're looking forward to spending time with them! Toby has a chest x-ray tomorrow and a check-up with the Pulmonary doctor. We love Toby's pulmonary doctor, so we look forward to these appointments - they are always very beneficial. Have a great weekend!

Kicking

Toby is such a joy! When I was getting him ready for bed tonight he was kicking and kicking his right leg. It's just fun to see him move a little bit more than he normally does. He also is chewing on everything!! I think he might cut a tooth soon. (Update August 24, 2007)

Our nurse is sick today, so I am on my own. It's been a very crazy day, and I'm exhausted. All of the boys are napping right now, so I'm getting a little break. Toby had his rectal biopsy re-scheduled for Wednesday of this week, so pray that it goes well. We should have results in 48 hours. Also, Toby has another Urinary Tract Infection, this time caused by a different bacteria. He'll be on antibiotics again!! It's frustrating, but the Urology Nurse Practioner assured me that this isn't all that uncommon with the straight catheterization. Pray for us today! Thank you.

Waiver Updates and Coming Tests

Toby is doing pretty well. He has a rectal biopsy scheduled for Friday, Aug. 31st, and they are also planning on doing another sleep study in the middle of September. The sleep study will determine how well the ventilator is supporting him, and if the settings are correct on the vent. His new Mic-Key button feeding tube is working very well. We are going to appeal at a State Hearing the decision to disenroll Toby from the Ohio Home Care Waiver. They have good reasons to be dis-enrolling Toby, because technically he has not used the services to cover the nurses - our insurance is still paying for the nurses, but everyone we have spoken with from different State Agencies have recommended the hearing - just to gather information and to advocate for Toby. Conor starts pre-school this week at Worthington Christian; we met his teacher today and I think it's going to be wonderful. One other prayer request that we do ask for - My Grandfather is going to be having an extensive surgery on his back on Sept. 4th, please pray for this. Thank you so much for continuing to stay up to date on Toby and our family! -Carrie

Home Care Waiver Updates and Hirschsprung's

First of all, Toby is doing MUCH better. I guess his lungs looked GREAT on the x-ray; We think his body was just fighting off a virus, and since he's hooked up to a pulsox 24/7, you just notice more. He's in a better mood, and doing really well.

God is really reminding me today about letting Him be in control, and that I still have to continually trust Him. We received our notice in the mail that our Home Care Waiver will end on Aug. 31st. There was some confusion over it, and I was on the phone for quite awhile today getting things sorted out. We are appealing the decision and will go to a state hearing on the matter. It's all very exhausting, emotionally and physically. It's frustrating for me also, because I feel like it takes so much time away from all of the boys. God will see us through - The good news; insurance will be paying again for our nursing care for the next 30 days, so we're not without nurses or help; for this we are thankful.

The other update from today is the GI doctor thinks Toby may have Hirschsprung's Disease and wants to do a biopsy of his rectum. This is a disease where you don't have any nerve endings in your colon; which would explain his extreme belly distension because his stool moves through his digestive system and then basically stops and piles up in his colon. If he does have this disease, they would do surgery to take out the parts of the intestine that don't have nerve endings. It's called a "pull-through" surgery. It wouldn't totally take away his bowel issues (he will always have these because of the spina bifida and the neurogenic bowel), but it would help in how we manage it. They'll try to schedule the biopsy some time next week. Here is a web-site that explains this really well:

http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/hirschsprung-disease/Pages/ez.aspx

Again, the doctor isn't positive Toby has this, but they will do a biopsy to rule this out; His symptoms are characteristic of Hirschsprung's.

Thank you for continuing to lift us up - it seems like things are always exciting around here!! This weekend is Bruce's birthday and our 7th anniversary (Yes, it's on the same day - Sunday!). Bruce is getting old, I won't tell everyone that he's turning 34! We're also going to visit his family - a cookout for our nephew Luke, who will be leaving for Iraq this fall. He's in the marines. This will be the first time that some of our nephews and nieces have seen Toby. We're looking forward to time with family. Thank you again for being our partners in prayer! Good night.

Oxygen Issues and The Snots

Toby is trying to come down with something right now. Yesterday he had a fever, and was having oxygen desaturations in the afternoon. His lungs have been junky, and he was on extra oxygen all night last night. We took him today for a chest x-ray, and don't know anything as of yet, but the radiologist wasn't concerned enough to send him to the hospital to be admitted, so that's good. They want us to keep him on oxygen for the next few days to let his lungs rest, and we started him on orapred (a steroid) to keep them open. We know there's been a respiratory virus going around lately, which has several kids in the hospital...so we're keeping a close eye on him. Thank you for keeping up to date on Toby!

Mic-Key Button Update

First of all, thank you to everyone who are praying about Medicaid. The nurse hasn't called yet to schedule an evaluation time, but I will let you know when.

Toby did great yesterday getting the Mic-Key button and the barium enema. The Mic-Key may not be permanent because I guess the tube that goes into the small intestine may have a tendency (in Toby's case) to curve around and come back out into his stomach, so we're keeping an eye on him to make sure he is not refluxing up formula. He can't have any food into his stomach because of the risk of refluxing and aspirating it into his lungs. We're praying, though, that the MicKey will be able to stay in. The radiologist thought it was wishful thinking for him to get one this early..we will see! The barium enema didn't really tell us anything yet,; they didn't find anything out of the ordinary. The report will be send to the GI doctor, so we should hear something on Monday.

We have a new Saturday nurse starting today; she will do all of our Saturdays...we're excited to have her start, she's very nice.

Have a great weekend!

New Seating and Medicaid Waiver

Nothing huge to report. Toby's having a good week. I bought him the Fisher Price Space Saver High Chair yesterday. It's a booster seat type chair that has a tray and good head support as well as the 5-point harness system, so we can sit him up more and he can play with things on his tray. He seems to do well in it. Friday we have to go to the hospital for a barium enema - they want to see how his digestive system is working, and also they're putting in the MicKey button (new feeding type of tube). Evan's pulmonologist told Erika (his mom) that there's a very bad respiratory virus going around right now - the hospital went from having 9 patients to 21 patients the next day with it, so please pray that God will protect Toby when we go for his appointments on Friday. 

Just in - a new prayer request. They're threatening to pull Medicaid Waiver on us again. They will be sending out a nurse to do another evaluation. I'm so frustrated and tired of dealing with this. Please pray, pray, pray - if they pull waiver, it will mean a lot of out of pocket expense for us - Right now the waiver helps to cover doctor co-payments, prescriptions, and therapy. Plus when insurance decides not to pay for in home nursing care we will not have nurses either. I'm trying not to panic, and just trust, but please pray. Thank you.

Mickey Button in our Future?

Toby saw the surgeon on Tuesday about his g-tube, and it's doing great - no granulation tissue. They are going to try and put in a MicKey button next Friday. It's hard to explain, but basically it's a button that his feeding tube will screw into. The button has the tube going into his stomach and small intestine, but when he's not getting fed, he won't have a tube hanging off of his stomach, you can detach it. This should help take care of his feeding tube coming out all the time.

His his x-ray showed that his hip is not out of place, which is great, but I still have more questions for the doctor about one leg being shorter than the other. You only notice when you pull both of his legs straighter.

Taking Care of Each Other

Today our nurse wasn't able to come because her daughter was sick, so the day was a little bit crazy. Toby had OT, and so that was good. He definitely seems to be getting stronger - holding his head up more, pushing up on his arms, etc. The OT hadn't seen him in 2 weeks, and she was impressed with his improvement, so I was excited about that - I love all the ideas we're getting to work with him.

I have to share a fun story about our oldest son Conor - who's 4 and Garrett who's 2. I had a bunch of things to do with Toby before I laid him down for a nap, so the boys were in their room (they have bunkbeds) and Conor was reading books on Garrett's bed. So, I finished with Toby and then went in to put the boys down for their nap. Well, Conor looked at me and said, "Mom, I got Garrett ready for bed, I read him a story." Sure enough, the music was on, the fan was on, the blinds were pulled down, and Garrett was tucked under his covers and was ready for his nap!!! It was so cute - and I CAN'T believe that Garrett actually let Conor act like the "dad" and put him to bed. I just had to share, my babies are all growing up so fast. Toby is 7 months now!! Have a great evening.

2nd Myelo Clinic Appt.

Toby's Myelo Clinic appointments went well today - we were there for a LONG time, though. His renal ultrasound showed no swelling in his kidneys (good news). He had an OT evaluation, and we also had the Physical Medicine Doctor and the Orthopedic Surgeon look at his hips. They didn't seem too concerned, but his left hip might be out of place (which I guess seems like something to be concerned about - but she said they really can't do anything about it now or wouldn't do anything about it now - not sure why, need to ask more questions about that). They did take an x-ray of his hips to double check, but we didn't get those results. The Developmental Pediatrician gave us some good ideas for a medicine and an herbal supplement that puts good bacteria back into his bowels to help him with his belly distension, etc. We also were able to get a couple of prescriptions for some equipment (a Tumbleform Feeding Chair and a Wedge for positioning) that will help Toby sit up with help, and also to strengthen his body when he's on his tummy. I'm looking into how we're going to get these items and who's going to pay for them, so pray for us on that. We also saw the opthalmologist about his eyes (these kids have a presdisposition to eye crossing, etc. and it runs in our family - i.e. Conor had eye surgery for this). There was just enough time for him to look at Toby and say that his eyes were moving together, but we didn't have time for him to actually dilate his eyes to look at the nerve. It's not urgent, so they will complete this at the next Myelo Clinic in 3 months. We still have to straight cath Toby every 4 hours - to keep his bladder empty. The plus about this is it will keep his kidneys and bladder healthy, which we want, so I'm okay with doing this. I think that's all - sorry for the LONG update. I'll try to post some new photos soon - Toby weighs almost 15 pounds and is 24 inches long - He's getting to be a big boy! Have a great weekend.

J-Tube Replaced Again - Conor's 4th Birthday

Well, Today is Conor's 4th Birthday!! We had a party with Evan at the park and some friends. It was a lot of fun. When we arrived home around 2 p.m. Toby's g-tube came out again - this time ALL the way out!!!!! We're headed back to the hospital in about an hour to have the J-tube part replaced again in Radiology. I am beginning to wonder if the G-tube is defective, one of the pieces fell off too. Plus his g-tube site has been bleeding a little, so it's been irritated - we will ask the Radiologist about this, and if he doesn't know we will try the surgeon that put it in. We're still having a good day - It's just frustrating for us to be headed back to the hospital for the 3rd time in 10 days about this feeding tube! I am thankful we only live 20 minutes from the hospital - that is a good thing.

Toby went with us to the park for Conor's birthday - I can't believe my baby is 4 already. He will be in preschool in the fall - time does go so quickly! We'll post another update soon.

GI Doctor Orders

I was able to speak with Toby's GI Doctor and she's starting him on a liquid stimulant called sennacot (spelled ??? not sure). She also wants him to have a Barium study done in the next few weeks to see how his bowels are functioning.

Toby still has a cold, but he's tolerating it well. We are going to see all of the Myelo Doctors on Friday at Clinic. It's the long day where we see the Developmental Pediatrician, Orthopedic Surgeon, Urologist, and Physical Medicine Doctor. He may also see the OT & PT from clinic. He has a renal ultrasound scheduled also; pray we have a good day. Our biggest concern for this appointment is his hips - they seem really lose and his legs just don't ever stay together - they flip out all the time - he's always doing the splits. We will see what they say about this. Thank you for praying.

Belly Distension and J-tube Displacement

Well, Toby still has a cold, and his belly has been really distended and full of air. We're doing everything we can to get him to have dirty diapers (suppositories, massaging his belly, exercsising his legs), but it just seems to be getting worse. I have a call in to his GI doctor to figure out what we should be doing next. His feeding tube came out again last night. This time it was my fault because I had him on his tummy propped up on a Boppy pillow and went to turn him over and it got caught. I was able to deflate the balloon and get it back in (a small balloon filled with water is what holds it inside of his stomach). I called radiology and they said the J-tube probably wasn't dislodged enough, so we let it go until today. This morning we had it checked and the tube was still in his small intestine, so that was good! :) We're starting to be regulars in radiology (3 times in 3 weeks!). His urine culture came back clear today - NO bacteria, so that's good news. We also are staying on our Medicaid Waiver for at least another month, so that's great news also. Thank you for continuing to lift us up in prayer!

Updates

So far Toby's cold only seems to be in his nose, and he's coughing some, but he seems to be doing well. We had a Help Me Grow Physical Therapist come out today to give us ideas on physical therapy, which was good. They should come out once a month. We are having issues with our Medicaid Waiver and Insurance again in regards to covering our in home nursing care. Our waiver could go away if we don't use it soon, but insurance could also cut hours. Please pray that this will not happen and that we have wisdom in how to handle this. We feel very caught in the middle, and are not sure who to trust. Toby's bladder infection seems to be going away, he's done with his antibiotic now. We began a new one today that he will be on indefinitely. Thursday we will do a new urine culture to see if the bacteria is gone from his bladder. Next Friday we have our big Myelo Clinic (Spina Bifida) appointments with all of the doctors and specialists, and he also has renal ultrasound scheduled (on his kidneys). Thank you for continuing to pray. Have a wonderful day!

Toby started Occupational Therapy

The weekend was very busy, but we managed to get through. Toby has a cold, his nose has been really runny, but thankfully it's Monday and the nurses are here to hel p out with that. The Occupational Therapist came today - she is the same one that our friend Erika and Carl have for their son Evan. She was great - made Toby do a lot on his tummy and on this exercise ball. He didn't like it very much, but it was good for him. He still can't hold his head up, so the things she showed us will really help. She's wonderful, so it's going to be great!! :) Pray that Toby's cold goes away quickly and doesn't develop into something more serious. The weather has been beautiful - so we're enjoying that! Have a wonderful day.

GJ-Tube Replacement and UTI

Today was even crazier than yesterday with Toby. This morning his GJ-tube (feeding tube) came out. The nurse and I put it back in, but then we went to the hospital to have it replaced. Since the J-tube goes through the larger G-tube and has to curve into his small intestine, they have to do it in fluroscopy (a live x-ray)...to make sure it's in the right place.

Toby does have high amounts of pseudomonas in his urine (a bacteria), so they are treating him again for that. It means he has a bladder infection. This is the second time in the last 3 weeks that they have found this bacteria. The problem with the antibiotic is that it's really thick and you have to crush a pill and mix it with water then put it into his feeding tube. The radiologist that replaced his feeding tube told us today to plan on being back in there on Sunday with a clogged tube if we put it into his J-tube so we called the Pulmonary doctors to see if we could have special permission to give the medicine into his g-tube and therefore his stomach. They were okay with it. The problem with Toby having anything in his stomach is he has reflux and then he could reflux up the medicine and because he can't swallow well he could aspirate it into his lungs. We don't think it will be an issue though because it's not a large amount of liquid.

The urologist also wants us to straight cath him every 4 hours to keep his bladder free any residual urine that might stay in there and then be a breeding ground for bacteria to grow. After he's done with the medication to get rid of the bacteria, they are starting him on a low dose of another antibiotic as a preventative measure for keeping his bladder "bacteria free".

I'm tired, it's been a long day, but hopefully Toby will be on the mend now. His lungs are still not sounding real great, so we will continue to work with that to make sure they are clear.

Oxygen Needed

Toby is having an okay day. He is having some desaturations in oxygen, so we've had to turn on O2 tank through the ventilator. His lungs sound clear, so we're not exactly sure what's going on. I have a call in to the doctor so maybe he can figure something out.

The appointment with the neurosurgeon went fine. His shunt seems to be working well, and we'll just have another check-up with him in 3 months. (Hopefully, no sooner than that!) We still haven't heard anything about Toby's urine culture and whether or not he has an infection, but we should today or tomorrow. Thank you for continuing to check up on us.

UTI

We see the neurosurgeon on Wednesday morning for a follow-up appointment. I think his shunt is working well. He may have a urinary tract infection, we did a culture today and should find out by Friday. I think the Urologist is going to end up putting him on prophylactic antibiotics (preventative) so he doesn't continue to get these infections. Toby should start Physical Therapy and Occupational Therapy in the next few weeks. I'm really lookingforward to this because I think it will greatly help him in getting stronger. We'll keep you updated.

Trip to Michigan

I just wanted to write a quick update. We had a great weekend! Our car ride up to Michigan was smooth (the construction wasn't as bad as what we thought it would be) and Toby did really well. He has been healthy and not needing suctioned very much.

I could feel everyone's prayers for me on Sunday. I believe God was able to use my song and testimony to touch people's hearts!

I will write more about our trip later! Thanks for praying!

July 6, 2007

It's Friday and we're home again!! We had a wonderful week visiting with my aunts, uncles, cousins, grandparents, and great-grandparents, and friends. We took photos of everyone holding Toby, and had a nice set-up with all of Toby's equipment. The weather was perfect - not too humid until the last few days. Conor and Garrett had a lot of fun eating s'mores, sitting around campfires, feeding fish in Grandma and Grandpa's mini pond, watching frogs, catching fireflies, enjoying Grandpa's fireworks, and picking raspberries until we couldn't eat anymore!! I was even able to make freezer jam and brought A LOT of berries back with us. We are tired, but it was such a wonderful trip. It was a blessing to share with my parent's church and visit with friends from there. Thank you for praying - Toby did great - Did you see Toby's web-site has over 20,000 hits!! I know that means that Toby has been thought of and/or prayed for at least that many times!! Amazing!! I will post some new photos soon from our trip.

Tube Clogged

Well, we have had an exciting weekend! Toby's appointment with the GI doctor on Friday went well. She gave us some ideas for relieving the air in his belly and since then it's been much better, and we're slowly increasing his food intake up to 42 ml an hour for 20 hours. Saturday we had a picnic with the moms group at our church, and our day nurse was able to go with us and Toby. It was great; our weather hasn't been humid this week/weekend, and it has been wonderful to be able to take him out places.

This morning while I was giving Toby a medication through his GJ tube, it got clogged. It's a medication he's on because they found a bacteria in his urine culture this week, so they're treating it with this really thick and yucky medicine. We ended up having to take him to the hospital (Radiology) to replace the tube. To explain a little further, the G-tube or Gastro tube is a larger white tube that goes into his stomach. The J-tube (or jejunum) tube is a smaller tube threaded through the big G-tube that goes into his small intestine or jejunum. It was the J-tube that was clogged, I tried flushing it with water several times and even tried Coke, and nothing worked. Thankfully we weren't there too long, and now he has a brand new one for our trip to Michigan. He still has to receive this medication for 2 more days, so pray that it doesn't get clogged again. An answer to prayer that we had this week, is the granulation tissue around his G-tube is going away and NOT coming back. On a tip from a new friend, we stopped putting gauze underneath this round plastic circular disc that holds the tube flush with his skin, and since then we have had no scar tissue. Yeah!! We have lots to do this week before we head to Michigan; feeling excited and a little overwhelmed, but I know it will get done. Have a great evening!

Toby's First Trip! Three Months Home Today!

Toby is doing pretty well. He's had a larger amount of secretions, and since Garrett has a cold, we have been giving him a medication to help keep his lungs clear. They increased his food again today because he isn't gaining as much weight as he should. He weighs about 13 lbs. 6 ounces now. He has been drooling a lot, and still running a slight temperature, which we are attributing to teeth coming in. He's almost 6 months old, and I just cannot believe it. We have been home from the hospital 3 months today!

As we get ready to leave we would ask you to pray for these few requests: 1. That Toby doesn't get a cold or sick before we leave for Michigan or while we are there. 2. That preparations would go well, we have a lot to pack in order to leave. 3. The trip would go smoothly and that Toby would tolerate it well. He hasn't ever traveled more than 20 minutes anywhere, so this will be a huge distance. Plus, I heard the construction on I-75 getting into Michigan is a bear, so hopefully the trip will take the least amount of time as possible.

We are so excited to take a trip to see all of my extended family and friends. On Sunday, July 1st at 10:00 a.m. I will be giving a testimony, singing, and showing a slide show of Toby to the church I grew up in. It's at Bible Baptist Church in Birch Run, Michigan. I am excited and nervous, praying that God will speak through me and receive all the glory for His faithfulness in our journey with Toby.

Friday we go to see a Gastroenterologist to check on his belly with the issue he was having with gas in his intestines, and also to establish a relationship should we need to see this type of doctor in the future. His belly has been doing very well with the new formula. Toby's g-tube site and NOW his trach site has granulation tissue around it, and has been bleeding, so we are fervently praying for this to resolve also. We will see the ENT Nurse Practitioner on Friday also to see if we need to burn off some of the scar tissue with silver nitrate. This makes me very nervous since it can also burn the surrounding skin, especially with all of the secretions that come out around his site.

Improvement

Toby's feeding pump is doing much better. We were still having issues, but I think we finally have it regulated. Toby seems to be cutting his first tooth. He is drooling a lot, and has had a little bit of a temperature. Garrett is also cutting a tooth and has a runny nose, so please pray that Toby doesn't get a cold or get sick before we head to Michigan in 2 weeks. I really need everyone to be healthy!! His fontanels (soft spots) are feeling pretty good, so we are just continuing to monitor that. This week we have had Vacation Bible School at our church. I have been teaching the Pre/K kids, and Conor and Garrett have been participating. It's been a lot of fun, but we also miss Toby, so we have been spending a lot of time together at night!

Feeding Pump Trouble Shooting

I think we may have finally gotten the feeding pump figured out. Last weekend I had e-mailed the company that makes the Kangaroo Joey Pump, and had been talking to a guy from their research and develpment department that tests the feeding pumps all the time. He gave me a few things to try, so we did. It ran great one night and then on Wednesday night, it ran too quickly again the other night, so I e-mailed him, and he called today. Come to find out the feeding bag is only supposed to hang 6 inches above the pump not 18 inches (like it was). We are trying this today to see what happens, but we're hopeful this is exactly what it was all along. Friends are coming in to visit this weekend from Virginia - Sonya Judkins, her 2 boys, and her Londa Foster. We are very excited to see them.

Results and Feeding Pump Problems Solves

Toby's CT scan came back normal today, and his fontanels have been feeling better. Our neurosurgeon wants to see us back in one month; so we will keep an eye on him.

Toby's feeding pump worked like it should have last night! :) I had contacted the company that makes them by e-mail over the weekend, and one or their employees in research and development actually called me yesterday to talk through some of the issues because they had never heard of this happening. We changed a few things, and it's working better!! :) Toby also seems to be doing well on the new formula, so we're thankful for that also. Have a great day!

Daily Updates

Toby had a strange weekend. Friday I was concerned because he wasn't having dirty diapers like he should, and then he began to have several, so that was a huge answer to prayer. His belly was full of air, and we managed to work that out of him. On Sunday, he was having several oxygen desaturations, but his lungs were clear and his secretions were thin. This morning Bruce and I changed out his trach, and things have been much better! We're still having major issues with his feeding pump. They changed it out twice last week, and it is still giving him his food faster than it should. Pray we get this resolved. We're planning on heading up to Michigan to visit all of our family the end of June into the first part of July, and I want everything to be ready and working properly before we leave. We don't need any emergencies while we're up there! :) Toby sees the neurosurgeon on Wednesday and will have another CT scan. His fontanels seemed to be better, more soft and sunken, so we will see what happens on Wednesday.

Feeding Pump Issues and Cathing

Toby is still adjusting to the new formula, and we're having issues with the feeding pump. They have replaced it twice and it is still running his food way too quickly (3 hours faster than it should). I'm not sure what the issue is. His belly has been more full of air this week, so please pray that he will continue to adjust well or that we will know if we need to change his formula.

His urinary volumes have been higher too, so we are cathing him more often. This is disappointing, but in order to prevent infection, we need to do this. All in all it's been a pretty good week. We will see our neurosurgeon again next Wednesday. Toby's fontanels are feeling fairly soft again, so I'm just praying that if the shunt is malfunctioning we would see a significant change on the CT scan this week. Thank you for continuing to pray.

CT Scan Results

Toby had 2 Doctor's appointments today. We saw the surgeon about his g-tube. His site is looking pretty good, but he still gets scar tissue around it at times and we have to burn it off with silver nitrate. She said that it's probably something he's just going to have; it's in the genes we have!! :) We won't go back to see her for 2 months.

We also saw the neurosurgeon. His CT scan looked great, but he still wants to keep an eye on Toby's head. Sometimes a shunt can be malfunctioning and it won't show up on a CT scan. His fontanals (or soft spot on the top of his head) were bulging for 12 days. He also seems to have a pocket of fluid above his myelo site on his back. (The myelo site is where his spinal column was splayed open, which they closed the day he was born.) About 2 days ago, Toby had some major dirty diapers - like 4 in twenty minutes, and since then his fontanels have been soft and more sunken...so there is something to the idea that when his bowels are full of air they can't absorb the fluid from the shunt tubing (which ends in his bowels and is where the fluid drains from his head). The doctor also mentioned that a viral infection or urinary track infection can display symptoms like a shunt failure, but actually not be the shunt. He doesn't have a UTI, but could have a viral infection because he's been running a slightly elevated temperature and had lots of dirty diapers. Bottom line, The doctor wants to stay on top of things, and we will see him again next Wednesday for a CT scan and to be checked. He still is acting great, and like I said today his fontanels felt great; nice and soft and sunken in.

Transitioning to Formula

Toby's doctor's appointment went pretty well on Friday. His CT scan we don't know much about except that the initial result in the computer said stable. His fontanels still don't feel right, so we will see the neurosurgeon on Wednesday of this week; hopefully we can find out more. His chest x-ray showed improvement in his lung volumes, which is great because the air in his belly has been much better also, which means his lungs have more room to expand! :) We are beginning to transition Toby from breastmilk to a formula called pregestimil (it's already partially digested, and hopefully easier on his belly), so pray that this goes smoothly and doesn't affect his stomach and digestive process too adversely. The boys arrived home safely, and had a wonderful time at Grandma's. They were so noisy tonight, and I wondered if they were extra noisy or if I had just gotten used to the peace and quiet this week! It is good to have them home; they always seem to grow up so much while they are gone.