Wow, lots going on but only going to do a quick update. Disney started off with a morning trip the doc in a box for Drew. He also had an E-infection. A little late but never the less we hit the road. We were so excited to get away for a bit, we needed a break. The first day was ok but then we found out my FIL was in the hospital in renal failure. We toyed with idea of heading back but after talking about it, we thought for Drew we needed to all stay and there was not much we could do anyway. After a week and a half in the hospital he is home and doing much better. It was a crazy 2 weeks. Rylee did well the first day and that was it, she was pretty miserable. The food they had her on was not doing well with her system. Yet again we had to switch her. We saw neuro on that Friday and we were told to see Gastro again and then they would talk. Her weight is up a little and that's great. Since the conversion she has gained and hopefully with the right food she will continue. I know she is no where on the charts but I will be happy if she at least follows her own curve. Basically at this point we have to decide how much further we want to take this. Lot's for James and I to talk about. I'm a need to know person. We are busy getting ready for the holidays in between all the hospital visits, Dr's, therapy etc... I really want to get into the x-mas spirit it's just not always easy. As a kid I loved the time leading up to x-mas, now, It's after when I have time to sit and relax and enjoy it.
I know this is brief and I'm leaving large chunks of what's going on out but this is all I can write now.
Ok, so I am very thankful that Thanksgiving went so well, and that's where it ended. When Rylee has surgery that reacquires a tube down her nose for whatever reason you can almost guarantee a runny nose and cough that has been known to turn into pneumonia. Saturday morning when she woke up I just knew that once again we were going to go down this road. Of course this is also the day I'm having a holiday open house for Mary Kay. I quickly call her peds office and they call in a script for albuterol and we start nebulizer treatments. Can this girl catch a break????? NO!!!! We have been having problems with her port site for quite some time now but Monday night was awful. I went to the gym for the first time in forever and when I got home James told me she had been screaming the entire time. She cried from 6:30 at night to 8am the next morning. Now, I think it's the tube because she is trying to pull at it and just plane miserable with it. I call the peds office again to see if they can order a KUB but got no phone call back(that will not happen again, Dr Jones and I had words about it.) I then called Dr. W up in St.Pete they called the order into health park and off we went. The KUB came back fine but she was still miserable and holding her site area. We were told to either get into the ped right away or we would have to go up there to be admitted for test. I called the peds office back and demanded to be seen. We were seen at 6:45 at night and did not get out until 9:30. Turns out she had a raging ear infection. Dr. Jones told us she won the prize for the worst one he has seen. Poor thing was pulling at her tube because she was in so much pain. Well pulling at it irritated it so badly that until today she would not let us get to it to feed her, not good. We are loading her up on calories now. Of course this week is busy for us. I hardly ever make plans in advance anymore. It's just to hard with Rylee. Well Monday I had two facials to give, Wednesday an open house and conference, Thursday James and were so suppose to have us time and go to a Jason Mraz concert in Tampa and pick up my new bike, so excited. Well, it's Thursday and I'm home while James is in Tampa. It was going to be hard to leave Rylee sick and my Mom ended up with an eye infection. I'm a little bummed but I totally never get my hopes up to do stuff anymore, it's just the way our life is now. I'm happy that James got to go with my Dad and thrilled that they will pick the bike up tomorrow. I may actually be able to ride a bike with Drew tomorrow. I have dreamed about this day.
Sunday we are suppose to leave for Disney so keep your fingers crossed for us. We are looking forward to 5 days of no Dr's or therapy, just enjoying the "happiest place on earth" Our week will end at the Neurologist office on our way home in St. Pete. Please wish us well, this is a very important apt. Hope everyone has a great and happy week. I will try and update from Disney but no promises.
Enjoy the holiday season. I don't mean go out and give 10,000 gifts but to enjoy the decorating, music, festivities, family, make memories because that's the best gift of all.
Ok, so it's really hard to put this day into words. Thanksgiving means more to us now then it has in the past. I know it shouldn't, and we should never have taken anything for granted but lets face it, we all do, I still do. I wanted to spend this day with family. I wanted everyone to sit and watch my kids play, yes kids. Not just one but 2, our beautiful, loving, full of energy son and our strong willed pint size 21 month old who is here. She, is here:) It has been a long hard road but on this day we were just us hanging out loving life. We were so lucky to have had my Aunt and Uncle come into town. Drew was beyond stoked that they were coming, very cute. I really wanted this day to be upbeat but while we were all siting to eat, it dawned on me that she may never have a Holiday meal with us. How awful for her to have to watch us and never be able to eat with us. I can't fathom that. I don't want her to have to live that way. I tried not to think about it but it was with me the rest of the night. I also realized I can't change it so I needed to be thankful for their, laughter, smiles, tears, tantrums, attitudes. You see most people complain about the bad days. Don't get me wrong, I do to but I also remind myself that all of it makes my children who they are and they are pretty special people. Love your family, hug them a little more, kiss them more, tell them you love them more. Don't take the small things for granted because no one knows what tomorrow will bring. The day did not go as I planed in a few different ways but we were all here together and that's all that matters. I love my family and was so happy to spend the day with them even if Drew spent the entire day in his PJ's. Like father like son:)
Thank you to everyone who stopped by to see us. No words were needed but we know why you were here. For all the people that called, thank you. I'm sorry we did not answer the phone but we decided that we didn't want to waste the day talking on the phone and not being present with our family. Your thoughts, prayers and love were much appreciated.
Friday went well but Rylee is miserable. I know this will pass but for now it's no fun. I'm so tired of her always feeling like crap. James and I were talking about it this weekend and what's the worst part for us is that we feel like she probably has never had a day where she feels great. How awful that at 21 months old she has never not been sick. Please don't take things for granted especially this time of year. Cherish what you have, we do, and look what our lives are like. She now has a GJ tube with a tube going to her stomach to vent her when she starts to vomit. We talked about the whole swallowing issue. The thought is that it's a mitochondrial disease. We will know more when we see the neurologist. I guess if it was something simple or a gastro issue she would get better not worse. It usually becomes a neuro issue when there are signs and symptoms that worsen as they are in her case. She will most likely have to have a muscle biopsy, NOT FUN!!!!! I really don't want to have to do this, it is painful!! So this is where we are at. She probably won't be able to ever eat by mouth, not sure how I feel about this yet besides crushed. Drew went with us this time and he was so happy. It was comforting for him to be with us.
While we were away my Mom cleaned our house from top to bottom, THANK YOU!!! We lost the best cleaning person/friend ever just about 2 years ago and have not been able to find anyone we are comfortable with since. We finally hired someone because there is no way I can do everything with 2 bad legs and she canceled, we miss Roxanne.
So Sunday Mom moved in with us for a bit. This is hard for me. I love my Mom, love that she is here to help but I hate that kind of help. It's not a personal thing at all. If my Mom just moved in for no reason I would be fine. The deal is she moved in because once again my life is turned upside down due to my leg or should I say both of my legs. You don't go through what I go through with my leg with out any emotional scarring. Don't get me wrong, I have a GREAT life but this event in my life changed me. For the most part it changed me for the good but it also left it's negative mark. I don't want to need people. I needed people for so long. When I can't walk, drive, be independent it brings me back to a place that I don't want to go. I hope to be driving in the next few days. With all of this said I do appreciate what everyone has done. So James thanks for loving me through everything, Mom for giving up your life to help with mine. I love you and appreciate everything you do for us. Sean and Dad for just being there. Andy and Sean for dealing with cars. Andy you have no idea how hard it was to call you and ask for help, thanks. To everyone who offers to help and I say "no we are ok" thanks for the offer. Sometimes the offer means more then the action of doing something. I will know in the next few weeks what will happen with my leg.
Outside of that stuff it has been a pretty good week. We spent the entire week at home. No Tampa for us this week. It was a welcome break for all. I got to chaperone Drew's class trip. He was so excited. He had one the week before and I had to cancel on him to be with Rylee. Rylee was ok this week as long as I held her, she was not feeling to well. We spent Saturday morning with the Andersen's and then went to Jason's party. Rylee was having a much better day and had fun most of the day. She even let my MIL hold her briefly. Both kids had a great day. I was going to go out to dinner with Robyn and her Dad and James was going to put the kids to bed but Drew was not to thrilled, he wanted me home. I decided as a nice treat for him I would ask him if he wanted to join us. He was thrilled, it made his day. It was something special for him and I.
Rylee will be having a procedure done on Friday so we will head up to Tampa on Thursday. I have a good feeling about this so please pray for her. I know she will always be sick. I just want to be at a spot where are managing everything and not always going in and out of ACH.
This has not been a great week for us. We had to tell Drew that yet again we would be going back to Tampa, not a happy camper. This is so hard for him. On Monday at Drew's soccer practice I slipped and busted my good leg really bad. I didn't want to admit how bad at first because I needed to be with Rylee. I was not about to not be with her at the hospital. I NEVER break down but in the parking lot I just fell a part. I hate to say why, but seriously WHY????? I see the ortho on Monday to see if I will need surgery. It's better but not great. The loud popping sound was not a good sign. Oh well I will get through this with Grace too. Having a fused leg makes the rest of your body take the brunt of everything and the left leg obviously had enough. I'm so grateful my Mom is here to help. I just wish she didn't have to.
Ok, on to Rylee girl. We did the 48 hours in the SMU( love this area, private rooms) She showed no signs of seizures which was great. On Friday she went for her swallow study and she scared the crap out of them. She started to do what she does to us. The test that was suppose to take 3 hours was ended in 15 minutes. She passed liquids ok but when they gave her food, it was bad. The food is getting caught in the exact area that airflow goes through. There was no air in or out and then she started to aspirate into her lungs, not good. Thank God I know she does this because the people doing the test were trying really hard to not freak in front of me. At this point she is not able to eat by mouth. I'm not really sure what happens next because the Dr's need to watch the DVD of the test. AS soon as I left the room they were on the phone with the Dr's so we should know more by early next week. They are also going to move her feeding tube to a different place in her intestines and make a 2 valve port. The hope is that we can feed her through her intestines but vent her stomach before she starts to vomit and put her zofran. She has lost over a pound in the last week.
Ok, so we are back home AGAIN, but, not for long. After seeing Rylee's neurologist and having her EKG they decided we could go home for the weekend. It was really important for us to be home for Halloween. Drew was still traumatized from last year when we were in the hospital and missed it. We have to go back this week until at least Friday. She will have to be hooked up to computer monitors for the an extended EEG. They really want to pin point why she stops breathing. I will keep everyone posted the best I can. Feel free to to text me. I will text back as soon as I can. Not looking forward to this. You all know how much she dreads this and we have been up there for the last month. This to shall pass:)
OK, so I always miss home(NY) the most in the fall. It's my favorite season. The leaves changing, pumpkin picking, apple picking, fall festivals and cool crisp air(not cold.)Yesterday we took the kids to get their pumpkins at a church down the road. I give them credit they try to make it like a real patch but let's face it, it's a bunch of pumpkins on platforms on the church lawn. They have one small area for photo ops and that's as good as it gets. We did hear about another church that at least has hayrides, might have to try it next year. Oh well, have to take the good with the bad. WE DON'T HAVE TO DEAL WITH SNOW!!!!! and it does not get dark at 4:30. The plus is Drew and Rylee really don't know the difference because they have never experienced anything else, but Mommy and Daddy do. The kids had a good time
We will head back to ACH on Tuesday as I know anything I will let everyone else know. Rylee not eating has it's good moments and bad ones. It's really hard for us because she's not crying this loud pissed cry it's this cry of sadness. So hard to listen to. My 20 month old should not feel sadness to that depth.
I'm posting a pictue of her walking around with a cup. She loves to roam the house holding a McDonalds cup, weird but cute.
So we have hit the stage of fort building. I remember doing this with my brother when we were kids. We would go downstairs and go into the boiler room where all the extra blankets and pillows were and build away. I'm sure it drove my Mom crazy because it was such a mess but it was a blast. James and I now get to do this with Drew, so much fun but it makes a MESS!!! We all know how much I love that, truly my Mothers daughter.
Ok, so a lot has been going on the last few weeks and I can't wait to share it all but I don't have the time to write about it right now. Look for another update soon.
A few weeks ago Rylee choked and stopped breathing briefly. I had no idea why. It was quick and enormously scary. A few days later she did it again and on Saturday once again it happened. I can deal with pretty much anything but I draw the line at not breathing. I think James and I handle things well but this is to much for me. We went back to St. Pete and saw Dr. W. We are not completely sure what's happening but she is no longer allowed to eat by mouth. This will be HELL for us. Rylee loves to eat, she knows when she eats, and where her food is. This breaks my heart into a millions pieces because up until this she was finally gaining weight, looking good, happy and walking. We will now go back to endless hours of crying. God help us get through this. Tomorrow I will call her neurologist. We need to know if she is having seizures or if this is all related to her digestive system. She will go back up there in the next few days for EKG, ECG and swallow study. I will post the results as soon as I can.
On my last post I put down all the October birthdays and I forgot my Godfathers Uncle Frank so happy belated B'day, love you and sorry.
Aunt Pat , you rock and I'm so proud of you. You went from a duck paddling with swimmies to a soaring eagle. This could not be a better month for you to kick some BIG C's ass.
We are home from St. Pete. Rylee did great, Thank God. I love the Mickey button it's so much better for her and for us. She no longer has a tube hanging out of her and tied up into her diaper 24/7. We just attach the tube when she is on feedings. We still don't know totally what's going on with her and that scares me to death but we just take it one day at a time. As Dr. Jones said a few months ago when we saw him last that this is just a band aid until we can put all the pieces of the puzzle together. I really hate BAND AIDS. I'm a need to know person so this is very hard for me to except. Life is no longer the same for us. I feel as if life has stopped this past year and half. Yes, we have done lots so that everything appears normal to Drew and anyone else who sees us but I don't think I have really lived in those moments. This is our life now and I want to start enjoying it again. No, I don't know what each day will bring but each day is a gift. I want Rylee to start doing things. She has missed out on so much it breaks my heart. She is WALKING!!!! I am beyond stoked. We were not sure that it was possible but she is doing it. She is not stable and her hips are bad but she self corrects so with time I hope she will be strong enough to fix it on her own. It helps that Mommy use to rehab for a living so I have been able to work with her a lot. Speech therapy has been awesome so far and I hope it continues. I can't wait for her eat normally and talk. She has started say quack quack and ruff ruff. She has also started to sign which helps. She gets frustrated because she can't communicate so all this should help.
Drew is the best big brother. He loves his sister so much. Leaving him again was hard but he is getting better with it. I hate seeing the pain in his eyes for his sister, it is gut wrenching.
Hope everyone is having a great week, we are tyring to make the best of ours:)
I guess it's really almost two weeks ago now. We had a really busy but mostly fun week. Drew had 2 birthday parties(read post about my swim in the pool) he had a blast. It's always fun to see him play with all of his friends. It was also book week at his school and Thursday night was family fun night. I volunteered to work it, not sure what I was thinking. It was fine. but I worked a little longer then I was suppose to and that was a bit hard because Rylee needed to go to bed and James had kickball. Thank you Carly for taking over for me so we could leave. Drew had a great night playing with his friends and reading books with Mrs. Rhoda. It was really nice to get everyone together as a family. I can not stress enough how much he loves this school and how much they love him. Makes writing the check every month a little bit easier:)
Ok so kickball was a blast for James. His team lost and of course they lost to our friends team but he said he loved it. After the game the team went out to the Edison. I love that James has something to do besides work that he likes. He so busy with work and us that it's a night where he can just have some fun, he NEEDS it and deserves it. Hopefully they will win their next game. I will keep you posted and update with some photos.
I went out two nights in a row. That's a lot for me. Friday night was MNI at Mamapalooza Mom's house. It was fun. We watched What happens in Vegas( I think that's the name of it) I thought it was cute but some thought it was the worst movie they had ever seen. It was fun meeting so many new people. Lucky Lucinda did not have to drive so she had more beers then me:( I did enjoy the redstripes I had though, good old Jamaican beer:) Saturday James and I both went out. I can not express what a big deal this was. We have not been out together in over 7 months. It's really hard for both of us to leave Rylee girl. Our friend Leah sent us an email about a beer trolly in the Cape and we thought it would be fun so we decided to try and see if we could make it work. We did and we had a blast (thanks Leah for asking us.) People watching at the Pearl was a favorite for James and I. Sadly we had to leave early James had to work Sunday and again, the Rylee thing. It will probably be another 7 months before we go out together again but for one night we were out as if all was normal:)
Just a quick update and I will be back tomorrow to update about everything else in the past week. It was a busy and fun one. Rylee lost a bit of weight, not good. I knew this was going to be the case since we had a long spat of vomiting everything up. If we can keep her vomit free she should gain so here's to a vomit free month. At this point she may alos have CVS and dis-functional digestive tract. We will have to wait until she is a bit older and bigger to figure all that out. With in the next 3 weeks she will go back to ACH and have a mickey button put in. I will keep you updated on when that will be. Her weeks are filled with therapy, feeding tube and Dr's. We are doing our best to involve her in everyday activities. When the days are good they are really good and when they are bad they are really bad. The problem is you just never know what day it's going to be. She is looking great her face is full her hair is getting longer and she is trying to communicate. Keep praying for good days. I will update more about the rest of us tomorrow.
Ok, so alot of you know that when I was preggo with Rylee a little boy almost drowned in our pool. It was one of the most horrifying moments ever. I'm narotic about water anyway, not really sure why. In my previous life I must have drowned or been burned to death as I have issues with those things. Yesterday Drew was invited to a pool party and against my better judgement we went. Thank the lord James made it home to watch Rylee. Well, one of our friends is pregnant with twins and she has 2 and 4 year old. She bought her husband with her to help. He was a little busy with all the other kids who wanted to jump all over him when their daughter jumped in the pool( the 2 year old) No one was moved to help so in I went in fully clothed, it was a sight. Not only was I soaking wet, when I went to change Drew in the bathroom toilet paper stuck to me and I had no idea. I walked out of the party and ran into publix soaking wet with toilet paper stuck to the back of my legs. Ugh, it was a sight but at least Lily was ok.
So Saturday we were invited to our friend Terra's house for a fisher price party. She won a contest and they sent her toys for all of us to try out. When we got there Rylee got down and played with one toy right away. Our child never does this. She hardly gets down and plays so for me this was a little emotional. Well they raffled off the toys and I will give you one guess who won it????? Yup, it was us, thanks Terra. The last thing we needed was another BIG toy both of our kids have not stopped playing with it. It was a fun day for all:)
Sorry once again it has been so long since a post had been done. Since it has been called to my attention by many here goes.
Drew is doing great! Still loves school. Of course it's only Pre-K. I hope he still loves it when it's more work and less play. Soccer has started up again. We now have nite practices, ugh!!! It's really not that bad and he enjoys it. He does wonderful in practice but he's not that aggressive during the game, if you can believe it. I guess it's me telling him "no hands" all the time. Oh well, as long as he enjoys it.
Rylee is doing ok. She had rough week and a half. She was not keeping anything by mouth or tube down. We have taken her off food by mouth lowered the rate again and now she is doing much better. This of course does not help us get to bolus feeds but I don't really care as long as she gains. She has had a great weekend. Lets keep our fingers crossed that she continues. I started Mommy and me with her last week and it's a bit of a challenge because a lot of it is centered around food and she is behind all the other kids. We will stick with it and hope that she gets better. She had her speech eval and she does not really know how to chew correctly which is why she chokes a lot and her speech is behind so we will be starting that therapy soon. Afternoons are still a nightmare for us but we are working through it. All in all she is doing well for now and hopefully it will stay that way.
James and I are doing well too. James will be playing kickball on Thursdays, that should be funny stay tuned for an update on that. I was suppose to play too but they changed days and I can't do Thursdays plus we both can not be away from Rylee when she is on the tube.
I can not believe how time just flys by. Drew started Pre-K this week!!!! He totally loves it and that makes James and I feel wonderful. We toyed with the idea of pulling him out of the school he had been in the last few years. They have a program here called VPK which just means that it's free. TJ where he goes now is VERY expensive and with all Rylee's mounting medical bills and the fact that the school is just way over priced made us think we would pull him and send him to VPK. After much research we were not thrilled with any of the VPK programs. The curriculum they follow is way behind what he has learned already and the last thing Drew needs is change. TJ has done everything in their power to make sure Drew is doing well and feels safe, secure and loved. He has had a lot going on in his little life the past 18 months, poor kid. He just thrives there so we decided to stick it out another year and we are beyond excited that we did. If you could see him everyday you would never second guess keeping him there. Rylee actual starts Mommy and Me in September. It feels like yesterday that I was there with my little man. Soccer starts again on Monday. We just went and bought new cleats. I love watching him run around. I'm not very excited that they are now at the age where they have night practices but that's what happens as they grow. Nights are the worst for us so we will do our best to make this work and we have friend who offered to take him to practice if need be( thanks Leah) Hopefully James and I will figure it out so that one of us can be there. It's really hard for Drew when we miss these things because it always goes back to his sister being sick:(
Tomorrow I leave to go to Tampa to do training course with Robert Jones( make up artist to the stars) Since joining Mary Kay Robyn and I have done work with brides so I need to learn more because we all know how good I am at that stuff(NOT) It is a totally crazy career path for me but it fits into my schedule and so far is financially beneficial. I will go to Tampa tomorrow come home Saturday night then go back with Rylee on Sunday. She has to be at All Children's on Monday morning. Rylee girls seems to be doing ok. Last week we found out she has an infection so she is on antibiotics for that. We also found out that she will need leg braces. She just is not able to walk on her own. When she walks her hips externally rotate and her knees hyperextend(I know all my Towson peeps will understand this) Thursday she will finally have her speech eval, thank the lord. She really needs this. So it's safe to say we have a very busy medical week ahead of us. I wish you could all see Rylee in the last week or so she totally deveolping a personality, the girl is funny but don't tell her NO!!! That pisses her off beyond belief. She loves to give her brother loads of kisses and hugs, to cute. Ok, off for the night. I will try and update next week after Neuro, Gastro, brace and speech eval.
Ok, so being home has been a little on the rough side. Trying to balance the feedings with allowing time to be able to go out and do things with Drew has been a challenge and after her Dr's apt where she did not gain weight we have increased the amount of hours she needs to be on the tube. It would not be so bad if she was able to wear a back pack with the pump but she can't so she can only crawl so far away from us and we always have to be with her to carry the pole where she wants to go. If she wants to walk holy moly that takes talent. She holds both our hands and we have to figure a way to maneuver the pool all at the same time, not easy. Dinner time is the worst time for us. One it's so hard to cook because she's on the tube then and that is usually her cranky time. Thank you to our neighbors Gail and Tim who made dinner for us our second night home. On the other hand we are Soooooooooo happy to be home and in our own comforts. I will do this for as long as I have to as long as she is ok and gaining. Drew has been amazing and I can only wonder what this is doing to him. I worry constantly about that. All I can do is my best but I feel like it won't be enough. He is petrified that every time I leave his sight that we are going back to Tampa, poor guy. Ok, so for a Dr's update as I mentioned above she did not gain. At first I thought she did but after checking with Dr. W, she did not. My child who poops once every 3-6 weeks now is pooping all day. We are hoping that this is just because she can't handle the new stuff they have on, or that the flow is to fast. We have slowed down the flow but what that does is increase the amt of hours she is on. Right now we are 18 hours a day and by Monday could be up to 24. If this is still a problem after the changes in flow and formula things will not be looking to good. In that case there maybe a mal-absorption issue. I'm totally leaning towards the fact that she can't handle the resource 1.5 because she did fine in the hospital on pediasure. We will get stool cultures if we can just to double check. I have to check her every hour during the night so I'm a bit on the tired side. Rylee gets the tube disconnected and then all the food inside her and all the food in the bag ends up in her bed, not good. The one thing we thought the peg tube would help with was her wrapping the cord around the neck, this is what she did with the ng tube. Well, the other night I went in and she had the cord wrapped around her neck 4 times, what am I going to do??? This scares the crap out of me. Other then all this stuff we have spent the week trying to make it fun for Mr. Man. He goes back to school in a week and I don't want it to end on a sour note for him. We have had Stephanie over a lot. In the afternoons this is usually a lifesaver for me. They keep each other busy and it allows me time to focus on Rylee. We went to chuckie cheese with Deana and the kids and yesterday we had a playday at Deanas with Lucinda and Leah. It was great to just hang with everyone and hopefully we can start doing it more. Now all I need is a major MNO or just a NO does not have to be Moms. Oh well, I better go the fam is coming over for breakfast and then I have a MaryKay thing this afternoon.
Sorry this is so late. Rylee would not let me leave at all until now. She is doing really well today. Yesterday was rough she was in a lot of pain and spiked a pretty high temp. Everything went well and we hope to be going home tomorrow. She is fever free and off the morphine. We all know how I am so you can imagine what she is like, one tough cookie. She has a little bleeding around the port site because she is relentless with wanting to pull it out. I warned the docs that this would happen. Having worked with Rylee for the past year they were afraid I was right and I am. We are now brainstorming on how to keep her hands off. She was vomiting yesterday too so we started her on pedialyte first then to kids response. Giving Rylee something new is usual not a good thing since she normally vomits it back up but the tube seems to work and she handling it well. Thanks for all the phone calls and well wishes. I will touch base with everyone once we are home.
I want to kiss the inventor of those itty bitty lollipops. They have literally saved our life this past week in the hospital. Rylee is miserable here but as long as she has a DumDum and I'm walking her in the papoose all is good. We walk about 10-12 hours a day which is good since all I eat is crap. I can't put her down to eat so it's usually fast and fried, yuck!!! Thanks to my Dad going to a few stores we should hopefully have enough lollipops to get us home:)
Title says it all:) I'm so excited I know there is so much more ahead but at least she is putting on a few ounces a day. Everything is still set for her to get the perm tube on Friday. With any luck we will be out of here Sunday or Monday.
Rylee will go into the hospital Thursday in the AM to insert the NG tube not the perm yet. In light of some new test results we will do this first then next Friday she will most likely have the perm tube put in or A TPN. We will be in the hopital for at about 10 days. I will try to keep everyone updated as best as possible. We love you all and all the well wishes.
This will be short with stuff left out but here is the main gist of what is happening in the very near future. Rylee will not have the NG tube put in with a long hospital stay. They will be operating this week(we hope) to put in a perm tube. We have no clue if it will help or not but we will find out faster then if we did the NG tube. She will be in the hospital for about 3 days. The first day will be pure recovery they are cutting her gut open. After that the hook up and feeding will start if all is ok she can come home. Shortly after she is home we will most likely be leaving for St. Louis. Please keep her in your prayers.
The test that we have been waiting for was never done. Since so many have been run we lost track a bit. This morning we took her to get it done and will hopefully have the results back soon. We will head back to St. Pete on Sunday and consult with the Docs on Monday. A final decison on whether we try the J-tube or not should be decided this day. If we give it a shot she will probably be in the hossy for 7-10 days as this can be very painful. I will try and keep everyone posted not sure if I will have the computer or not. I will at least try and get on my Dad's. I believe prayers can be answered so please pray for her.
So yesterday we had a BBQ for Mom's birthday. We had all gone swimming while the kids were napping. Drew woke up to the pouring rain. He was so upset that he missed swimming with us so we decided the next best thing, puddle jumping. He had a blast!!! We dressed him in his rain gear and the rest of us got umbrellas and off we went. There is nothing better then seeing your 4 year old having innocent blissful fun. Not a care in the world on his face, it was awesome.
Ok, so we understand that people don't know what to say to us because of Rylee so what a lot of people are doing is staying away from us or just stopped calling. Although we understand, know that this is probably when we need our friends the most. We don't need to talk about it all the time we just need distractions from all of it. I'm unable to talk to family about it and for the most part I don't want to have long drawn out conversations. We have lost a lot of people in our lives this year because of this and we don't want to lose more. It's better to say something then nothing. We know this is no fun for everyone else and that people don't really want to be bothered but just keep in mind what life is like for us. We love all of you and understand, it's just hard that the people you think will be there for you are the ones we hear from the least. On the 21st we will be back in St. Pete.
I have no idea where to start, we have done so much lately. I think I last left off with an update on Rylee. I know it was a poor update and I apologize for that. Sometimes I'm at a loss for words or basically just shut down. NY was wonderful in many ways and horrible in others. It was the most gut wrenching week and no one should have to go through what I did. My kids were let down again by some one who in my opinion has their priorities really screwed up. On to the good stuff. We were able to spend lots of time with my friends and some family. Drew was so excited to go to the bronz Zoo again and just be the center of every ones attention. We went to the feast twice which he loved. I have been going to this same feast since I was born and everyone goes back each year. It's great to see all the people I grew up with all in one place and of course the zeppolis, oh and free beer. The fire house does have some good qualities. All in all a week that I wish would have been different on many levels but also comforting to be "HOME" We left NY a day early because we decided we wanted to spend an extra day in Baltimore. I'm so happy we did this. I miss living there. The inner harbour, canton and Fells were awesome. We took Drew and Rylee to Port Discovery and they both loved it. For whatever reason Drew decided that he wanted to milk a cow while we were in PA. There are cows everywhere so I thought someone will let us try, NOPE. They have machines that do this. We were told about this maze place that has a cow kids can learn on so off we went. They were not going to get the cow until the week after we left. He was so disappointed. Do you know that this port discovery place had a fake cow that you could milk and it spat out water. He was in his glory. This place was really cool and it melted my heart to see there were even things for Rylee to do. We walked around the Harbour went on the ancient carousel(a few times), went to Camden yards, fells point, canton we basically just had an awesome time. We ate at ESPN zone Drew died and went to heaven. I was able to meet up with some friends for a lunch date. It was so weird to walk by all the places I got drunk at years ago, it seems as if it were yesterday. After MD we packed up and started the 12 hour drive to Hilton Head SC. It was great to spend a few days with my Aunt and Uncle. Drew drove all over in the golf cart and corvette. He now tells me daily that Mimi is going to buy these things for him. Listen my parents do a lot for us and buy us a lot but I will tell you for sure he will get the golf cart but there is no way he will get a corvette. We had a lot of fun on the 4th. My Aunt and Uncle took us to their friends house Sue and Paul. They live on the water with a really nice pool, and boat deck. When I think of heaven this is what I think off. At dusk the dolphins came out and they were swimming right in front of the deck, amazing. We BBQ'd and stayed for the fireworks. To my surprise the kids did awesome but the next day was one of recovery. On our last day there and our last day of vacation before we started the 8 hour drive home we decided to go to Hilton Head Beach and Sea Pines. Drew and Rylee had a great time jumping into the waves. Yes, my 25 inch 12pd daughter thought she could just keep walking further and further into the water to get to the waves. She's ballsy like her Mom but someone needs to explain to her how tiny she is. After the beach we went to Sea Pines to go to the Salty Dog for ice cream and a little time on the playground. We were all tired and it was early to bed since we were getting up to head home in the morning. We had an awesome vacation minus the 206 dollar ticket on the way home which even my Mother says was not my fault but we were in some podunk FL town and I guess they have nothing better to do then give out bogus tickets. Oh well, what can you do. Can't wait for next years road trip.
We are back and cell service sucks at Anna's so I'm hoping everyone checks in here like I told you to:) We don't know to much more now then before. They have to run some test and start discussing Growth Hormone Therapy. We have no idea if it will do anything but it's something. Other then that not to much to tell. We will probably end up in the hospital when we get home to do everything that needs to be done. Please keep praying for her she needs it.
We have spent the last three days in PA. It simply amazes me that Drew can get so excited about Thomas still. We had a awesome time. We stayed in a caboose, rode Thomas and a steam engine, went for horse and buggy rides, went to Cherry Crest farms. It was so much fun. If anyone is every near East Strasbourg you must stay, there is so much to do and the kids have so much fun. Thomas is wonderful here. We have seen Thomas in Miami and it sucks there. We are now in NY. We Spent the day trying to see everyone and have a little party for James. The only negative is James flight was cancelled. Oh well, at least he got to see his brother and New Girlfriend(like her) He is staying at Frankie and Cindi's tonight since John was unable to bring him the airport tomorrow. Love Frankie and Cindi they put the party together for him and were gracious enough to change their plans to accommodate bringing James to the airport and crash on their couch. You guys rock, thank you so much. Tomorrow we are going to visit my Grandmother, wish me luck.
We are in VA have been here since Monday. I have to say much to my surprise the kids did great in the car. It took us about 15 hours to get here and Rylee had only one minor meltdown and James only tried to crash us once. Drew has been having a blast camping in a RV, playing mini golf, swimming and just having some good ol Daddy time. James has been working around the clock so family time has been limited. The things we do to keep up with medical bills, the joys of adulthood. Ok, Drew is bugging me to "PLAY NOW". We are off to PA tomorrow to sleep in a caboose and ride Thomas again, to say Drew is excited is minor statement. I will try to post in a few days. Can't wait to see everyone in NY on the 22nd.
I can't wait to head up North tomorrow. It's so much work right now trying to pack for everyone though. I'm constantly thinking what am I forgetting??? I keep looking at the pile of stuff so far, wondering how it's all going to fit in the car. Lucky for me when I was a kid we use to drive to FL twice a year to see my grandparents. I use to watch my Dad pack a car like no one I had ever seen before. I can make anything fit in a car. It amazes James every time. We will be stopping at VA first then to PA to sleep in a train, Drew is going to love this and then we go to NY for a bit then to MD and SC before we finally return to FL. We should be gone for about 3 weeks but Rylee girl has an apt with Dr. Speiser in NY so we have been told that is very likely that she will end up in the hospital there, poor baby. She is probably one of the toughest people in my life. Her first year has been full of Dr's and hospital stays and my heart breaks for her. We will keep our fingers crossed and our prayers working on over drive. The next 6 weeks are crucial ones for her. We have not been back to NY since Rylee's Christening. This is a big deal for me. Up until this past year I would go back home about every 6-8 weeks. I love NY, I love my family and friends there. I wanted Drew to experience that lifestyle. I love FL would never move back but I will forever be connected to NY. The other day we had asked Drew where he was from and his answer was NY. I guess we went back a little to often. He truly thinks he's from there and will argue with us if we try to tell him otherwise. Poor Rylee has only been back once. Hopefully she will get better and we can start going back more again. Thoughts of what the car ride is going to be like with the kids keep filling my brain. The first driving stretch is about 16 hours. Both of my kids don't sleep in a car or stroller only in their beds. Weird, I know. Since we are leaving at 3am I'm hoping that for once they will sleep. I have to run to go pack more. To everyone in NY we can not wait to see you all. We miss you more then you know. It's very hard to have your biggest support system be so far away. I have the best friends in the world who are there no matter what happens and love them more then they know.
I have read many blogs but never thought it would be me blogging. A friend of mine(Lucinda) just sent me the her blog website so I decided to follow in her footsteps. Another thing for me to waste my time doing. Oh well, they are fun to read. It's easy way to update everyone on what's happening in our lives. So I am now an official blogger. Everyone can be updated on my boring life.
I'm a Mom of two wonderful children, Andrew(4) and Rylee(1). My husband and I are originally from NY and moved to FL 6 years ago. I love it here and won't move back but this is where I live my home will always be in NY. When I die someone better fly my ass back there to bury me. I love hanging outside with the kiddos, sports, working out and taking pictures.