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!