Some Background on Makenna and Baltimore

Monday, June 22, 2009

Results from Baltimore
We left Wed am for the drive to Baltimore. We had 2 gas stops, one lunch stop to run around and a stretch stop along the way. Makenna did amazing on the drive thanks to snacks and tons of movies. We arrived at the Ronald McDonald house around 8:00 p.m. The house was amazing and beautiful. The people were so friendly, warm and welcoming. It just so happened Ronald McDonald was serving dinner when we arrived. Makenna met him and took a wonderful photo with him, so adorable. We checked into our room and headed off to bed. It was a pretty good day, tired but good.We got up the next morning, ate breakfast at the house and then headed off to see the city before the hospital appt. We went downtown and walked around, ate at a nice little open air like mall and then headed off to the appt.We arrived at our appt about 30 minutes early to make sure we were ready to go. Makenna was dressed adorable of course and got lots of compliments. Her sparkly pink shoes always do that!!!! We were taken in about 2:15, triaged, weight, height, head measurement and placed in a room. We waited a good while till about 3:00 when a nurse practitioner, nutritionist, behavioral therapist and occupational therapist came in to get Makenna's history. I had typed out a month by month timeline of Makenna from day one to today. Thank god I did it really really cut down on the basic questions. They asked lots and lots of questions about what she does on a daily basis, how she reacts to situations, how eating goes, behavior concerns and much more. They left to get a highchair to observe her eating the meal I prepared. The nurse practitioner came back in and wanted to go over her growth chart as they are deeply concerned. I told her I was also concerned with her weight but I felt we were doing all we knew to do. They were not very happy with that I felt. About 15 minutes later a highchair arrived and we went for it. I prepared baked beans, oreos, crackers and bologna for her to "eat". She did wonderful and showed them how well she is doing. They counted all her bites and watched very closely. They wanted to see her eat yogurt which she did well. She also took drinks from her straw cup and showed how sometimes she takes a great sip and others are completely lost with her poor lip closure. They left again and returned with our verdict about 20 minutes later. This time the team came back and it also included a doctor.....He started off with his concern with her weight, again we agreed. He wanted to increase her amount and I told him she cannot handle that. If we even increase an ounce she vomits the whole feed. What is the point of that when we then loose all of the ounces we worked so hard to get down? He then suggested we change her G tube to a different type called a GJ tube. This tube would allow us to feed her the same way during the day with her G tube and at night with the J tube while she is sleeping. Right now we feed her by "gravity feed", we hang a syringe on her IV pole and let the food drip in by gravity, this takes about 25 minutes and goes into the G part of the tube which goes right into her stomach. With a GJ tube the J part of the tube goes into the intestines, we would feed her the same daily through the G tube but at night we would hook her up to a pump and feed her through the J tube with goes at a much slower pace and has to be monitored for blockages. We would be able to feed her more for catch up at night and since it goes into her intestine she would not be able to throw it up since her stomach will be empty and it will be going into her intestines. This tube will be more work and I am a bit nervous about the upkeep. The G tube we currently have can be replaced by us in a few minutes and is pretty simple now that we have it done. The GJ tube has to be replaced while an x-ray is being taken. A x-ray has to monitor the tube placement as it is worked into the intestines. So if she pulls it out or it needs changed we will have to make an appt to get it changed out. We try to stay away medically from the hospital as much as we can to give her a "normal" life so this just connects us back once again. They also want her to have an endoscopy to make sure all is "normal" on the inside. They want to check for allergies, inflammation and whatever else could be wrong on the inside. They then said my dreaded words "Inpatient Program". They recommended her for the inpatient program due to their deep concern with her weight and growth. They believe the inpatient program would benefit her more. We talked alot about the new tube and some brief info about the program. Then the team left and the behavioral therapist stayed with us to answer all our questions.She gave us a run down of a typical day in the program. The inpatient program is 8 weeks long at the Kennedy Kreiger Institute which is connected to Johns Hopkins Hospital. She would receive 3 set feeding sessions with a behavioral specialist, and speech and occupational therapy 2-4 times per week. The 3 feeding sessions would take place 7 days a week and speech and occupational therapy would be Mon-Fri weekly. The people were very nice it was a very long day and very stressful to take it all in. After touring the until it was 6:30 when we headed back to the RMH for dinner and to pack up for the trip home. I do believe the program would be best for her medically but for our family I have lots of concerns.PROS:Program for Makenna I believe would be really beneficial.CONS:Maison is not aloud in Makenna's room, for them to hang out we must stay on the first floor in the lobby. Chasing them around for 8 weeks while they visit in a lobby sounds so overwhelming and sad to me.Makenna cannot leave the hospital for for 2 (4 hour) passes per week. We basically get to sign up our 2 times per week for up to 4 hours. We can take her anywhere as long as we return her. This sucks.The rooms are old and the accommodations for this 8 week living in a hospital experience is less than comfortable. There is a chair in the room for one parent to sleep in at night if you want to stay with your child. Every since Makenna came home my rule is "Makenna goes, I go". She is admitted so am I. I can't imagine leaving her alone scared in a hospital where so knows no one.The area around the hospital and nearby streets are less than appealing. It is a much different life and culture than what we are used to. We would be taking straight routes from hospital to RMH for safety reasons.I will need a helper 24/7 the entire time I am there for Maison. Since we cannot come above the 1st floor with me he will need to be taken care of at the RMH when I cannot be with him.I basically feel like I have to choose one child over another. How do you leave a crying scared baby in a hospital crib to go take care of another one? How do you leave your little 2 year old baby away from you when you are together 24/7 daily to take complete care of another one? I am having a hard time figuring this separation out.How do you leave your husband and complete support system, move to another city (scary) and go on an adventure you are terrified of? I don't know how to go through this without David and my Mom by my side. David doesn't get sick time so we have to do fundraisers for any time we can cover the cost of his check for that week to allow him to come stay with us in Baltimore. 8 weeks is a loooonnnnnggggg time to be away from your main supporters.We met another mom who is in the day program and compared the differences in the day and inpatient program with each other. She was very nice and helpful, it was nice to talk to another mom going through a very similar situation.We packed up and headed to bed. We headed out at 6 am on Thursday morning, this drive wasn't as fun but we made it home around 6 p.m. We were so excited to see Maison, we missed him like crazy. I HATE being separated from him, we are super attached. We were glad to be home and glad to go to bed.....So where do we go from here.....I am working on fundraising for the cost of the program:RMH (15.00 per day to stay there for 8 weeks= total cost around $900.00)additional food and living expenses to carry 2 separate households for 2 monthsco insurance, co pays and deductibles for the program and medical costplane tickets for transportation to and from Baltimoretime for David to be off and be with us during this rough timeI am working on a charity garage sale as my first adventure. My second adventure will hopefully we a charity dinner and silent auction later this summerWe have had several people offer to come out and stay to help with Maison and we are so very appreciative for this. We won't know an actual date till probably early October. They tell us our arrival would be late October or early November to start the 8 week program. This means we will be there for Thanksgiving and Christmas and maybe New Years. The thought of being separated from David and my Mom during the holidays is so sad. We are like one big unit when it comes to the kids and I am scared to go off and do this on my own.So here we are..... I am starting with raising money and going from here. Many people have asked how they can help and so far these are the ways I have come up with.1) Donated unwanted items to our charity garage sale set for July 18th2) Volunteer to help at the sale, we needs lots of help, even short shifts would help so much3) Sponsor a day at the RMH ($15.00 per day is the cost)4) Help set up the charity dinner and silent auction (going to be asking for help and forming committees as I have learned I cannot do it all, all the time, i have learned to admit I need help and that's ok)5) If you have time to come stay with me at the RMH, let me know and we will be setting up a calendar to makes sure all our weeks are covered6) Im sure more will come later, this is where we have stopped for now.I have been typing for an hour and have a very busy day tomorrow so I have to get to bed. Thank you to all of our friends and family members who care so much about our children. It means alot for all the support we have received through the last 4 years, it has meant the world to us. We continue to work hard for the kids daily and provide them with all the support they need.Pictures to follow soon.Good Night!!!!!!!!
Posted by Makenna & Maison Kurmay at 11:35 PM 0 comments
Tuesday, June 16, 2009

Packing for Baltimore
Spent last night preparing the last of the paperwork for the trip. Well I thought the last.... Have been working on all of Makenna's medical and therapy records and creating a medical timeline for the doctors. I am so overwhelmed and nervous about what they will say. We have a 10 hour drive with no stops so with gas and eating probably about 12 hours. Mom is keeping Maison to make it easier on us, THANKS MOMMA!!!!! We will leave early Wed morning, our appoitment is Thursday at 2:30, we will begin our drive home early Friday morning. Praying the ride will go smooth and the appointment will go well. Makenna has started eating much better at home and I am so pleased and shocked!!!!! I will post what we found out at the appointment as soon as I can.