Zach started getting his "baby shots" on June 2nd. He got 4 of them-2 in each arm. He told the nurse quite clearly that she was a jerk. We go back in August for the next round.On June 5th we went to Tufts New England Medical Center in Boston. When I went to check Zach in the lady told me he wasn't on the schedule. She then looked in her computer and told me she had no record of Zach. Needless to say, I got a little frustrated but remembered that I had the paper that Dr. Webster had given us with the date, time and floor to go to. She was very grateful that I had brought that and said to give her some time and she would try to work it out.
Two hours later she told us we were all set. Zach got his Botox treatment at 12:30. It was very interesting and they did sedate him. Dr. Webster told us that the effects of the treatment would kick in gradually over the course of two weeks. It will be two weeks tomorrow and we started seeing positive results about a week ago.He's taken some mighty fine steps in his walker with no scissoring. After the treatment I worked on getting Zach into aqua therapy. He will be going out for therapy 3 times a week and getting therapy 3 times a week at home from the school. It took some time but his summer schedule is now set through the end of August. On Mondays he'll have speech therapy here in the AM and aqua therapy in the afternoon. Tuesdays he will have "land based" therapy at the rehab center. Wednesdays will be occupational therapy at home. Thursdays will be physical therapy at home and Fridays aqua therapy. It will be a busy summer for all of us. On June 16th he went for his first aqua therapy session. The therapist was in the pool with him and kind of restraining. She was quite surprised when he said "let me go". She said she couldn't do that and his response was "shoot", so he was definetly having a hearing moment.When it was time to get out he clearly didn't want to so his 45 minute session turned into an hour session. Next time we'll be bring a life jacket so that she won't have to hold him and he can do his own thing. Should be interesting. Carl and I had a meeting with the school and Zach will be going back in September. We all agreed that it would be best to start off slow and depending on how he re-acts we can build from there. For now he''ll start by going from 10:00 to 1:00. Since the school was going to hire a paraprofessional to be with Zach we suggested that perhaps they could hire Carrie, his LNA, since she knows him and knows his moods. They thought that was a very good idea and Carrie has an interview at the school tomorrow.Now that he's off the immunesuppresant drugs things are moving right along and we're so excited for him.Sorry for the lapse in updates but as you can see Zach does keep us pretty busy.Please keep praying for him. Thank you for your support.
April 30,2008
On Tuesday, April 15th we left for Minneapolis.Zach's first appointment was at 8 a.m. on Wednesday. We arrived at Clinic on time and they drew lots of blood. They needed so many tubes that they inserted an IV to draw through. For one of the test they needed to draw two more times at 15 minute intervals and then one last time after one hour. It's a long process but Zach tolerated it well. After that we went for a chest x-ray, a hand x-ray and a bone density test.They left the IV in since after that we were headed to the hospital for sedation and his MRI.We got back to the hotel around 3. Thursday was our big day starting with a neuropsych eval at 9 a.m.That lasted a little over two hours and then we headed over to the hospital cafeteria for lunch.Zach's next appointment was with the endocrinologist.
She had some test results for us but not all. We since have received the other results. Zach's blood tests were all good except for Vitamin D so he is now taking supplements for that.His bone density shows improvement over the past year and is good.His bone age growth is that of a 13 year old and that's good.Our next stop was the eye Dr. He told us that he didn't know if he made a mistake last year about there being some damage to the optical disc or if it healed itself, but he couldn't see it this year. That was very good news.Zach's last appointment for the day was Dr. Charnas. He only had a preliminary report regarding the MRI.
Stable no progression. He will study it further and send us more detailed findings. He is very happy with Zach's progress and wasn't surprised to hear that we had many questions for him.The first was about the Botox treatment. He said we should absolutely try it.We also wanted to know about hyperbaric chambers. He did not recommend because it could potentially be bad for Zach. We also wanted to know about a drug being used for multiple sclerosis. He didn't have an answer for that one and thought it was a good question and worth his looking into.In all we spent over two hours with Dr. Charnas. By the time we left clinic it was 6:30 pm and we were all ready to eat and rest up for the next day.Dr. Tolar was our last visit on Friday at 9:30 am.We waited for about an hour and then spent over an hour with him. He thinks Zach's progress is amazing. He and Dr. Charnas had already spoken and he told us he was in agreement with the answers.We also got a schedule for Zach's baby shots. That will start on June 2nd.As we get more written reports I'll keep you posted. Please keep praying for Zach. Thanks!
March 31, 2008
Hard to believe it's already the end of March! Will it ever stop snowing? Zach had a check-up at the pediatricians on March 6th and everything is good.On March 12th he had an appointment with Dr. Webster at the rehab center in Salem.He told us he finds Zach's progress amazing. He thinks that Zach is a determined little boy and he clearly wants to walk. He also said that the best walker for Zach is a Pacer. When Zach tries to take a step with his right leg it crosses over his left-he scissors-. Dr. Webster told us it has to do with spasticity and Zach can't control that. In order to help him walk he recommended a Botox treatment. He said that very few Dr.'s do it but he happens to be one that does. He wants us to talk to the Drs. in Mn. about it before he does it.He's had thousands of patients over the years but never one with Zach's disorder. He told us to schedule the treatment and if Zach's Drs. dont'approve we can just cancel it. It's scheduled for June 5th at Tufts Medical Center in Boston. The Botox would be injected into the muscle of his leg to eliminate the spasticity thereby stopping the scissoring. He told is he uses it alot with his cerebral palsy kids and he had positive results.That afternoon Zach's pt from the school was here and I filled her in on what we were told by Dr. Webster.She called and ordered a Pacer that day and it came the following Monday. It sort of is like a baby walker. It has wheels and he can sit or stand and go. He does pretty well in it.We're all set to go to Minnesota. We'll be leaving on April 15th and returning the evening of April 18th. We are writing our questions down as we think of the them.We are looking forward to seeing everyone again.
February 19, 2008
Hi everyone! Hope you all had a good holiday season. Vickie, who was Zach's 40 hour a week Nursing assistant for over a year, started having health issues in December. The agency had no one to cover for her so we had no help with Zach. The agency finally found someone at the end of January. Her name is Carrie and she is very good with Zach. It's great to have help again. Zach continues to move forward. He is FINALLY off the Gengraf. The Dr. told us to wait six weeks after the last dose and if there was no rash we could slowly start weening the predizone.The six weeks came and went and Zach was rash free. We cut back on the predizone and he started rashing so we had to go back up.I guess it will be a process like the Gengraf was. He continues to make gains physically. The stander is gone and we have tried him in one walker but are going to try others to make sure we get what's best for him.With a therapist standing behind him and her arms around his waist he actually took two steps on his own.When he picked up his right foot to step we were all shocked. He had not picked that leg up for over two years. It was a beautiful thing to see. We are waiting to hear from Minnesota regarding his two year check-up. We know that he has to have all his baby shots redone but don't know when that can start. His Dr. here doesn't know either so we'll get that answer at the two year check-up. Please kee sending positive thoughts and prayers Zach's way. They are clearly helping. Thanks!
November 8, 2007
To everyone who continues to check Zach's site--Thank you for your patience! We also had to be patient about the removal of the baby teeth. It took a long time for everything to be put in place and it finally happened on October 23rd. Carl, Zach and I were at the hospital for seven hours that day. Zach was in the operating room for about an hour and a half. They put him to sleep in the OR and then did x-rays of his teeth. They cleaned his teeth and found one cavity which they filled. After that was done they pulled eight baby teeth. We had thought four or five but didn't expect eight. The dentist gave them to us in a jar. I asked him if he was trying to break the tooth fairy. Zach, being the trooper that he is, did very well with all of it. He took an hour to wake up but when he did it was with a smile on his face. The Gengraf taper is on hold for now. We will wait a little while before trying again. In the meantime, we have asked Dr. Tolar if we could start weening him off the prednizone instead. We know we can't do both at the same time. It would be nice to be able to get Zach off of something.Zach continues to get stronger and more mobile. He's been getting himself out of both his recliner and his bed. We're not quite sure how he does it. His bed has rails so he somehow works his way to the foot of the bed and then onto the floor. After the first time we started putting his gym mats at the foot of the bed so he could have something soft to land on. During the day his mats are put next to his recliner. He turns himself sideways in the chair and then with his feet on one arm pushes himself over the other arm. He's quite creative.He can stand with minimal assistance and the therapists fell that the stander is no longer needed. We are looking into getting a walker instead.One of his pt's brought us a brochure to look at and is checking to see if we could find one to try it before actually purchasing it. Please keep positive thoughts and prayers coming Zach's way.
September 6, 2007
Wow! Hard to believe that it's already after Labor Day. Zach has kept us busy during the month of August. On August 9th we called Dr. Spivack and told him that Zach had been refusing to eat or drink anything for two days. Zach had basically done nothing but scream and cry and we just couldn't figure out what the issue was. Dr. Spivack told us to bring him in. Sure enough he, being the wonderful doctor that he is, found the problem. Zach has a tooth coming out on the top left side of his mouth. It's coming in sideways because the baby teeth are still there and it has no place to go. He recommended that we take Zach to see his dentist. We did that the following Monday. The dentist told us that she really couldn't help because he would have to be sedated and she doesn't do that. We spoke with Dr. Spivack and he told us he would speak with a friend who's a pediatric dentist. In the meantime Zach was eating and drinking again and things seemed to have calmed down. We got a call from the new dentist's office and the soonest they could see Zach was September 5th. We had our regular appointment with Dr. Spivack on August 23rd. The Gengraf taper had continued but Zach had a new rash on his chest and arms. We all agreed that it did not look like the GVHD rash. Dr. Spivack e-mailed Dr. Tolar in MN. and described the rash to him in medical terms and asked his opnion.Dr. Tolar also agreed that this was probably something else and recommended that Zach see a dermatologist.Two days later, on Saturday, Carl and I both noticed that Zach was stating to rash on his forehead. The dreaded GVHD rash. We hoped if we ignored it, it would go away. No such luck. It was a little worse on Sunday and looked horrible on Monday morning.Zach's appointment with the dermatologist was that day. Zach was looked at by three dermatologists. They all agreed that the new rash was one of two things--pityriasis rosea or psoriasis. If it was the sporiasis the fact that we had to go back up on Gengraf would take care of it. The other is a common rash that they don't treat. The increase in Gengraf was a little over a week ago and both rashes are all but gone. Now, back to the teeth. I'm waiting for a call from someone at the Elliott hospital which, hopefully will come today.Dr. Englander, Zach's new dentist, found that Zach actually has two adult teeth trying to push their way through on the top left. He will remove the baby teeth and clean Zach's teeth but it needs to be done at the hospital under sedation. Given Zach's immune suppresion and all the meds he's on this is the best and safest course of action.We agree and hope that it will happen sooner rather than later. Thanks to everyone for continued prayers and support.
August 2, 2007
Zach enjoyed riding in his van to go see Dr. Webster in Salem. It was a beautiful day for a ride and luckily there are shades on the windows. Zach cannot be in direct sunlight for any length of time so they came in handy. The last time he saw Dr. Webster was in February. Dr. Webster told us that he was quite impressed by Zach's progress. He also said the slight curve in Zach's spine seemed to be the same and maybe even a little better. He had thought that Zach might need a back brace but he does not. That was great news for us. He did, however, recommend foot and ankle braces for Zach to wear overnight. He does currently have braces he wears during the day but the night ones are different and so we will have the night ones in a few weeks.
The goal is to increase the range of motion in his ankles. Our next appointment with Dr. Webster will be in October to see if the night braces are helping. His dose of Gengraf decreased again last Friday.So far so good on that front. Please keep sending Zach positive energy and lots of prayers. Thank you all for your continued support. It helps us alot to know that so many people care.
July 16, 2007
Zach's poison ivy finally got better. He still has a few scabs but he's his old smiling laughing self again.All of the blood work done by the endocronologist was good despite the poison ivy. We went down a little on Gengraf this past Friday and this is the lowest dose so far. We'll hope and pray that that his skin co-operates this time.His next Dr.'s appointment is on August 2nd with Dr. Webster his physiatrist. We see him at the Rehab Center in Salem which will give Zach a nice long ride in his van.He continues to do well with the therapists and improving a little at a time.
Hope everyone is having a wonderful summer!
June 22,2006
Zach saw his pediatrician on Thursday June 14th.He was quite happy to see Zach looking so well and was pleased to hear him speak.He checked his skin, as we do everyday, and was happy to say " it looks good". How quickly things can change.Auntie Sam told us on Father's Day that she felt something "crusty" on the bak of Zach's head. We didn't really pay much attention since Zach had been eating finger foods and then putting his hand behind his head. He was going in the the tub that night anyway. We noticed a red spot on his neck and hoped it would be gone in the morning. Zach woke us up at 4:30 am screaming and crying-we tried everything to get him to stop-but nothing worked. The spot on his neck was bigger and looked like poison ivy but how could that be? He continued to be unhappy all day.He had an appointment on Tuesday with his endocronologist which had been made a few months ago. He confirmed that Zach indeed has poison ivy. It could have been something as simple as the cat coming in with a little of the oil on his fur and laying on Zach's bed. We didn't realize that you could get poison ivy that way. Zach's room is now off-limits to the cat but it's too little, too late. Trying to make Zach comfortable has been very frustrating for all of us including Zach. Please pray for Zach that this goes away soon. We can't wait to see him smile again and hear that wonderful laugh of his. It's been a very long week.
June 7, 2007
Since the last update and we been able to go down on the Gengraf again. We are now back to where he rashed last time. Maybe this time....he would then be off it at the end of August. We'll just keep hoping and praying that it goes well. He's been very chatty and saying more and more things clearly. I had been waiting a year to hear him say Gramma and was very excited to hear him say it last weekend. He's been getting some good workouts with the therapists.He's "walked" out to the deck a few times. The therapist gets behind him and moves his legs for him but he has taken some steps on his own with his left leg. He smiles most the time even though it's hard work for him. All these little things will in time add up. Thank you all for your prayers and support. It really helps us to know that so many people are pulling for Zach.
May 10,2007
Zach is doing well, however, we did have to go up a second time on Gengraf. Once he's rash free for three weeks we can try cutting back again. His wheelchair elevator has been installed and we're excited about that. Zach's Dad found a van with a wheel chair lift. It's old 1992 but he has checked it out and it's in excellent condition. He's going to buy it today which is also very exciting. It will make taking Zach out so much easier. Hagrid, Zach's puppy is coming along. He is growing quickly and now weighs 63 lbs. at 5 months old. Happy Mother's Day to all Mothers and Grandmothers!
April 23, 2007
We just got back from a visit to Zach's pediatrician. I'm sad to report that over the weekend Zach started rashing again. We are going to stop the Gengraf taper and go back up a little and hope that it goes away. We'll keep our fingers crossed that this is just a minor setback. Other than that Zach is doing well. He is speaking more and saying some complete sentences. He enjoys going out on the deck on these beautiful days. He can't be in the direct sunlight so we take him out late afternoon. His wheelchair lift should be installed soon and then we can take him out in the yard. It's getting hard for his Dad to carry him. His weight has gone up to 95 lbs. He is a growing boy.Please keep Zach in your thoughts and prayers. We need and appreciate the support.
March 28, 2007
We left for Minneapolis on Monday the 19th. Zach's first appointment was at the eye clinic at 12:30 on Tuesday.We got there at 12:10 and were there until 3:30. They concluded that Zach could see reasonably well if and when his brain cooperates. He does consistently react to light more with his left eye than his right. His next appointment was supposed to be at 2:00 and we went as soon as we left the eye clinic. They were very understanding and did the scheduled bone density test and chest xray. Chest xray was fine but the bone density test was somewhat below normal. Zach is now taking both calcium and vitamin-d supplements to avoid any further loss.Wednesday morning we had to be at the clinic at 8 am. We got there on time but the waiting room was pretty full. His case worker tried to move things along for us since she knew that we were scheduled to be at the hospital at 9. She called to tell them we would be late but that she would have a nurse put his iv in to save them that step when we got there. After they drew 23 tubes of blood (surprised he had any left after that) we headed to the hospital for sedation and his MRI. After he woke up and had lunch we headed to yet a third building for a stim test.The MRI showed no change since his six month MRI which is very good news and a good sign that the disorder is gone and causing no further damage. It appears, however, that Zach did probably suffer a mini stroke in August but it has resolved itself. The stim test measures gland acivity and showed that Zach's adrenal gland is not funtioning at all.We didn't get back to our hotel room until after 5 and were pretty tired by then. Thursday at 9 was Zach's neuropsych evaluation. The Dr. who did the evaluation joined us at our 12:30 appointment with Dr. Charnas who is Zach's neurologist. She told us that Zach's raw score was better than the one from August. Dr. Charnas, Carl and I were very happy to hear that news.Dr. Charnas told us that pror to this new protocol improved scores were unheard of.We then had a 2:30 appointment with the endocronologist. She told us we need to cut back on the adrenal gland drugs and will send us a schedule as to how to go about that. His gland is not producing anything because it doesn't need to and her feeling is that we need to give the gland a chance to function.Cutting back on anything works for us. Our last appointment was at 10 am on Friday with Dr. Tolar who is Zach's primary care Dr. in Minneapolis. He was quite happy with Zach's blood work and said the numbers were all good. He had already e-mailed Zach's Dr. here to tell him that labs did not need to be done every two weeks and recommended once a month as long as Zach is still on Gengraf. After that it can go to every 2 or 3 months.From that appointment we got a cab to the airport and made our 1 o'clock flight home. Zach's skin continues to look good and as the Gengraf goes down he tries to speak more and more.He pointed to the TV the other day and said "turn it on." We are looking forward to more and more clear speech and other progress. Please keep Zach in your prayers.
March 15, 2007
Yes, we are still here. Things continue to go well since the last update. Zach's labs have been consistently good. He continues to eat and drink well. We are still cutting back on the Gengraf ( the nasty drug). We are going very very slowly this time in the hope that he won't rash.We check his skin carefully everyday with our fingers crossed that we won't find anything. March 3rd was the first anniversary of Zach's transplant. Carl, Zach and I will be flying to Minneapolis this coming Monday. We are looking forward to seeing the people there who were so helpful to us and the Doctors who saved Zach's life. Zach's primary care Dr. there is Dr. Tolar. Zach has several appointments spread out over four days. Dr. Tolar is our last appointment on Friday and he will fill us in on test results that are available. We'll be coming home on Friday afternoon. Please keep Zach in your thoughts and prayers as he continues this long difficult journey.I will do another update soon after our trip.
January 17, 2007
HAPPY NEW YEAR! Sorry for the lapse in updates, but the month of December really flew by. We had a great Christmas.
Christmas Eve was hectic and fun. There were 13 of us for dinner.It was very exciting because Auntie MaryAllison got engaged!Zach has been doing great without his feeding tube and the equipment has been returned.His Aunt Roxanne gave him a german shepard puppy for Christmas and he's very cute. His name is Hagrid (from Harry Potter).
The Gengraf taper didn't last long as Zach started rashing again. He wanted to keep us on our toes for the New Year and woke up on the 2nd with a temp. It was over 104 and we had to take him to the hospital.His labs were excellent,chest x-ray was clear and the cultures grew nothing. They kept him for four days and we'll never know why he had a temp. I spent the daytime hours with him and his Dad was with him for the overnights. He's been fine since then. We're going to try to taper the Gengraf again this Friday. Hopefully, this time we'll have some success.We wish everyone a happy and healthy 2007.
December 5, 2006
Hope everyone had a great Thanksgiving! Zach really enjoyed his turkey and all the fixings. His feeding tube has been out for over a week now. His labs continue to be good. We started to taper the Gengraf on Sunday, November 26th and went down a little more last Sunday. No signs of a rash yet and we're hopeful that this time the taper will be successful. He's been speaking more this past week but we don't always understand what he's saying. The hope is that the less Gengraf he takes the clearer his speech will be. Time will tell. We appreciate your thoughts and prayers.
November 22, 2006
Hard to believe that's it's Thanksgiving already! Zach has been going without his feeding tube for two to three days at a time. He eats enough but we can't get him to drink enough. His Dad puts the tube back in a few days at a time to make sure he doesn't become dehydrated. Zach has been crying alot the past few days and we think it has to do with a loose baby tooth. He has a Doctor's appointment this afternoon and we will talk to him about that. Also, we'll be talking about starting to try to taper the Gengraf again on Thanksgiving day. Zach's labs done last Friday were good. He is making progress with PT and OT albeit slow. We had a training session at the school last Thursday from 8:30 am to 1:00pm. A blinddeaf teacher is helping us to establish a line of communication with Zach through object identification. There were 11 of us there and it was very interesting and informative. It will take some time to get the program designed for Zach up and running and more time after that to see results. HAPPY THANKSGIVING TO ALL OF YOU FROM ALL OF US!!
November 1, 2006
Zach is doing really well with eating. I called his nutritionist and she'll be coming over on Friday so that we can start keeping track of how many calories he's eating etc. Next Tuesday, November 7th we are having a reception for Zach. Please join us at the Manchester Country Club in Bedford from 6pm to 9pm. We would love to meet,chat with and thank all of you for your prayers and support.We would like everyone to come help us celebrate a successful trip to Minneapolis so don't forget November 7th--See you then!
October 24, 2006
We have added services for Zach through the school.He now has a speech therapist coming twice a week and they are also providing physical and occupational therapy twice a week so he's going to be a busy boy. He ended up in the hospital last week. His doctor felt that he was a little dehydrated and wanted him to get some fluids intravenously. He's home now and in good spirits. He decided he wanted to start eating a little and has enjoyed some chips, chicken tenders and chocolate chip cookies. We hope this continues. He holds the food himself and takes little bites and it's great to see him do that. Last Wednesday the 18th WMUR was here in the morning to do an update on Zach. It aired that night on the 6 o'clock news. Hope some of you got to see it.
October 10, 2006
So sorry for the lack of updates. I was having some issues with the site which hopefully have been resolved. Things have been hectic trying to get services for Zach. At this point we have a Licensed nursing assisstant who is here Monday through Friday from 10 am to 6 pm to help me care for Zach while his Dad is at work. She is not allowed to feed him or give him any meds but having her here is still very helpful. Zach is getting one hour of pt three times a week and 2 hours of ot. We have yet to get any services from the school but Zach's Individualized Educational Plan meeting is going to take place on Tuesday the 17th. Our hope is to, at the very least, get a speech therapist to come work with him. We did get a stander last week which was a much needed piece of equipment. We did try to start tapering the Gengraf again but after five days Zach started rashing again and we had to go back up. His latest labs were good.
September 14, 2006
Some of you may have seen the update done on August 31 which for some reason eliminated all the previous updates. When I restored the previous updates it dropped the latest update. Our last week in Minnesota was filled with appointments for Zach's six-month check-up and packing for our return home. On Wednesday the 23rd he had an MRI. Dr. Charnas called before we even got back to the apartment and told Carl that the ALD portion of the brain looked good maybe even slightly improved. He then went on to say that he saw something that had not been there previously and was sure that it was not related to the ALD but he really didn't know what it was. He said he needed to look at it some more and would call us back later. We were rather stressed about this and hoped that it would not postpone our return home. Zach's case manager called later that day and told us that Dr. Tolar had looked at the MRI and had scheduled Zach for a spinal tap that he would do himself the next morning.He spoke with us before the procedure and told us that he would have some answers for us the next day when we had our final appointment with him.We were very afraid that our trip home wasn't going to happen but even more afraid of what the spinal tap might show. All of our fears were laid to rest on Friday morning when Dr. Tolar told us that after working on it for a long time he found nothing that shouldn't be there and that everything that should be there was there. He found no signs of any infection and felt that the spotthey saw was reolving itself and was nothing to be concerned about. I was so happy to get on the plane home with Zach on Saturday. We landed at 4:30 and were home by 5. After Carl dropped us off at the airport he went back to the apartment to finish loading the car and started the long drive back. He got home a little before 2 on Sunday afternoon. On Monday a physical therapist was here to assess Zach and worked with him for a while. It was a good day for all of us. Tuesday morning Zach had a temp of 103.5 Carl called his Dr. and asked him to call Elliott Hospital to tell them we were bringing Zach in. They called us back very quickly and told us to use the emergency entrance and they would be waiting for us. They took us right to an exam room and took his temp 106.2. They moved him to a trauma room so that they could hook him up to monitors, gave him Tylenol through his feeding tube and hooked up saline through the Hickman line. A pediatrician came in and told us they were not equipped to deal with Zach's case and we needed to decide where we would like to go. I told him Boston Children's Hospital. He called them and then made arrangements for an ambulance to get him there as soon as possible.Carl was allowed to ride in the ambulance and when they left I came home to be here when Ashley got home from school. Zach had a bacterial infection and his Hickman line was removed as it was the source of infection which is very common. They told us that 48 hrs. after the first negative culture they would put what's called a pic line in his arm and then we could bring him home. The line in his arm was so that we could give him his intravenous antibiotics at home. In all we were in Boston for eight dys. Carl and I alternated hospital time as we did in Minneapolis. Since we brought Zach home on the 6th he's been well and we've been able to get back to getting pt ot and speech set-up. More on that in the next update.
