Ryan's May '08 Blog
May 5, 2008 - Ryan is still home and doing great! Can't believe he will have been home 2 weeks tomorrow. We are setting a record! He is still having a ball - laughing, talking, enjoying all the attention he gets, etc. Mom & Dad have done well with getting as adjusted as we can. Luckily most nights we only have to get up for a feeding change or two and maybe a wet/poopy diaper. Otherwise the nights have been ok. We still have some work to do on getting Ryan to take better naps but on Thursday he did really well. We had a pediatrician appointment on Thursday and we don't go back there until the end of July for shots. Ryan got his last RSV shot for the season. He weighed in at 17 lbs 14 oz that day. Physical therapy also came out on Thursday and Ryan showed the PT gal how he can roll over. He did pretty well. We have a few stretches we need to work with him on to help him out. Friday Grandma, Grandpa, Great Grandma & Great Granddad were at our house for dinner so he was spoiled with attention. Great Grandma & Great Granddad will be staying with us until they find a house in the Boise area so it will be helpful to Mom & Dad. They have been spoiling him with lots of attention. Saturday we felt brave enough to take Ryan down to Parma (about 40 minutes away) to Grandma & Grandpa's house. He was spoiled with attention and Tucker (the golden retriever) was a bit jealous. He did really well and was so tired when we got home. Sunday we took Ryan out to drive around subdivisions with Great Grandma & Great Granddad. He last a couple hours and then was tired and hungry so Mom & Ryan got dropped off at home and the others went back out. Today Ryan weighed in at 18 lbs 3 oz. He just keeps putting on those pounds! Dad worked with giving him a bottle today and he took 10 ml but enjoyed Dad squirting the formula into his mouth over sucking on the bottle. Whatever it takes right now to build up those swallow muscles - we'll take it! We can't tell you how nice it is to be able to drive home after work these days and to get stuff done around the house. We hope this continues for a long time. Friday afternoon we have an MRI and an appointment with the neurosurgeon. We're keeping our fingers crossed that all looks well! What is left of Ryan's fontanel still feels good and he acts great so we don't think there is pressure so hopefully both sides are working.
May 10, 2008 - Ryan is 6 months adjusted age today! Ryan has continued to do well (and is still home) since our last posting. We've been working on rolling over, sitting up and eating. He actually did really really good eating on Thursday night. He was tired, his eyes were closed and he was falling asleep (so he was focused on eating) and he latched on to the bottle and drank 15 ml like he never had a problem. Then he really fell asleep and Mom couldn't get him to take any more. We were soooo excited and soooo happy but unfortunately we have not had as much success since then. We'll keep working though! He had an MRI yesterday and then we were to meet with the neurosurgeon. While we were checking in for the MRI, the neurosurgeon's office called saying he was still in surgery and didn't think he could get us in until 4:30-5. They gave us the choice of coming back at that time or waiting for a week and a half as he is out of town next week. We chose to come back as we were very interested on what was going on with Ryan's head. They called at 4 and we got there at 4:30. We got to see the neurosurgeon about 5:30. Unfortunately it was not what we were wanting to hear. The left ventricle was filling back up and the right side had no change. Translation - the left shunt is clogged and not working and the right side may be working slowly. None of us expected the left side to give us any grief. UGH! The neurosurgeon pumped the valve on the left side and he said it flushed so nicely so hopefully that will help fix whatever was clogging it. We don't believe he pumped the right valve. He then took out the stitches on Ryan's head and then said since Ryan is acting like he is feeling good and showing no signs of pressure, let's wait until he comes back and do another MRI. Then if it has got worse or no change we'll talk surgery. So we have an appointment on the 20th to see where we stand. Ryan definitely acts like he is feeling good and has been so happy the majority of the time. We've been having sit at the dinner table with us at night and he loves it. He just carries on a conversation and as you will see in the pictures, he loves to put one foot up on the table. Yes we will correct this bad manner later but for now we'll take him sitting at the table with us. This evening Grandma, Grandpa, Great Grandma & Great Grandad watched Ryan so Mom & Dad could go to a birthday party. Ryan had a little bit of fussiness but otherwise was a good boy we're told. We wish everyone a Happy Mothers Day tomorrow. Mom thinks having Ryan home is definitely the best gift.
May 12, 2008 - Ryan weighed in at 18 lbs 9 oz today. He is such a big boy! We had a wonderful Mother's Day. Grandma & Grandpa came up. Dad made pulled pork for dinner and later Ryan's other great grandparents stopped by. Ryan had a blast playing with Grandpa. He is a Grandpa's boy that is for sure! Of course Tucker (golden retriever) was jealous! He kept going around to everyone else to get attention. We have continued to work on feedings with Ryan and tonight he did well for Mom - took 15 ml. When you can get him to focus - he does good. We are up to taking 7 hours off during the day from the continuous feeds. Hopefully tomorrow or Wednesday we'll be going to 8 hours. He is still acting like he is feeling good and has been such a great boy. We cannot believe he has been home 3 weeks tomorrow! The time is flying. This week we meet with the pediatric surgeon. Hopefully nothing new will happen there.
May 18, 2008 - We're sorry it has taken so long to write. The time just flies. Ryan continues to still be doing good. He seems to be having less reflux and we're hoping that is because the pumping of the shunts drained some of the fluid. Before all of this we never knew that if your spinal fluid built up in your ventricles it would cause you to have reflux or worse reflux if you already suffer from reflux. It is truly amazing the stuff we have learned over the last 10 months. Ryan was a stinker on Monday night and kept Mom up all night. Finally at 5 a.m. she called Dad and told him to come right home from work as she was going to try to get a couple hours sleep before going to work. The rest of the week he did great during the night. We saw the pediatric surgeon on Wednesday and she is very pleased. She is even happy to hear we're making progress with him taking the bottle. He weighed in on Wednesday at 19 lbs 4 oz. He had an 11 oz weight gain in 2 days? When the home health care nurse weighed him on Thursday he weighed in at 19 lbs 2 oz so he definitely had a weight gain. She was going to check with the pediatrician to see if he was gaining too much weight. We haven't heard anything so we assume all is ok for now. Mom has been making good progress with Ryan and the bottle. If he is hungry enough and tired enough, Mom can eventually get him to take the bottle with no problems. Mom showed the occupational therapist Wednesday afternoon what she has been doing and OT was pleased. Ryan took 18 ml during the feed on Wednesday with OT and since then we've had a feed at 29 1/2 ml and 2 feeds at 37 mls. We're making progress! Physical therapy had a good workout with Ryan on Thursday - he let her manhandle him and seemed to enjoy it. This next week we meet with the neurosurgeon on Tuesday. The MRI is at 2 and then we meet with the neurosurgeon afterwards. Hopefully there will be improvement but we won't hold our breath! We cannot believe we are almost at 4 weeks of having him home. The time has flown by!
May 20, 2008 - Ryan had an MRI today and then we met with the neurosurgeon. The MRI showed no change - no increase in fluid but no decrease either. Darn! The plan is to do nothing. We'll go see the neurosurgeon in a month unless Ryan shows signs of problems before then. Ryan was in a great mood (as he usually is) and loved the paper that they put on examination tables. Once he realized that if he kicked the paper it made noise - he was in heaven and he kicked like crazy until we left! He weighed in yesterday at 19 lbs 6 oz so we're still growing. He has continued to do well feeding with Mom (taking between 35-40 ml) except for tonight. He was so tired from the days activities that he didn't do well at all. The last two days he has taken between 20-25 ml when Dad has fed him so at least Dad is making some progress.
May 24, 2008 - Ryan weighed in Thursday at 20 lbs 0 oz! He is such a big fat boy! We love it. Hard to believe he is just about 10 times his birth weight. We have come a long long way! Mom & Dad have decided at the rate he is gaining weight, it is time to buy the next car seat because he could be in it in the next couple weeks. That one of the things they will be doing this weekend. Ryan has been doing well with feeding. He has took 50 ml with Mom the other night and took 45 ml with Dad yesterday. We cannot wait for the day that we can lose the feeding tube and just feed him regularly! Physical therapy had another good workout with him on Thursday. He is doing good but we're still not quite where we should be. Ryan will be 10 months tomorrow. Cannot believe we're almost at a year. We hope everyone has a wonderful Memorial Day Weekend!
May 26, 2008 - Ryan turned 10 months yesterday! In honor of that we drove out to the Lucky Peak reservoir as they were shooting out a big rooster tail of water as they prep for the winter run off. We decided to continue on up to Idaho City. He did really well sitting in the car seat the whole time and when we got in a hail storm his eyes were big looking around at the noise. When we got to Idaho City we decided to get ice cream at their little ice cream parlor. We were not going to take Ryan in at first but thought he isn't going to touch anything or anyone so it would be ok. He loved it. As soon as we got him out of his car seat (Dad carried him), he got all happy and started kicking and talking. Inside the ice cream parlor he had a ball. He continued to kick and loved seeing all the people. He was a challenge for Dad to hold on to and eat ice cream at the same time but Dad managed to pull it off. Mom put a small taste of vanilla ice cream on Ryan's lips. The cold definitely shocked him and he wasn't too sure about it but then seemed to think it was ok. He did well on the ride back and was off his feeding pump for 4 1/2 hours without a fuss. We have not done much else all weekend but hang close to home. Aunt Lindsey came for dinner last night and Ryan was so nice and puked all over her and our couch. Oops. Good thing we haven't bought new couches like we had wanted. We think we'll wait until he is past all of this. His other set of great-grandparents came up to see him today and had a nice visit. He didn't do well the last 4 days with feedings so hopefully we'll get back on track with that this week. Tomorrow we see the endocrinologist about his thyroid. When Ryan was born his numbers made them believe he was hypothyroid but as he has grown they have not really gone up on his thyroid medicine and his numbers have been ok. Hopefully tomorrow they will do more tests to determine if he truly has it or if we can get rid of one medicine. We forgot to mention that he hit his lifetime maximum on insurance benefits just over a week ago. We never thought we'd have a million dollar baby but we do! Luckily we still have not really paid a dime. I think the most we have only paid is $500 or less for this whole thing thanks to insurance and Medicaid. We definitely would be hurting without those two! Now we will move over to Dad's insurance and continue to hope the medical bills go down.