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.