Finally Home

It has been a while since I posted. Once my little fire engine got his drain out, he has been non stop since and I have been on full alert. He skipped all the steps of PT and OT and walked his way to the end in 4 days. Now, I can't slow him down! Saturday we finally headed home. I was nervous at first, which is silly. I should have been excited but I just worried about the what ifs once we got home. However, once we walked in the door and he immediately started playing as if we never left, my worries disappeared into peace.  For 3 months, my head has been full of worry and fear. I have watched him grab his head and wince, or cry for no reason. I have seen him throw up or go from having energy to laying on the couch in the middle of the day and telling me he is sick. Listening to others tell me it was no big deal, I had to try to convince myself every day there was nothing wrong, but my gut told me otherwise. As I sit here now on Monday, I have watched him play nonstop and turn back into the happy little boy I know, I feel at complete peace, a peace I have not felt in a long time.  I hope that this will be a distant memory, one that we think of only occasionally (during MRI's only maybe). Although I know that it will be a while, I do know that day will come and I can't wait for it. I feel that I need to end every blog entry with a big thank you to our precious Lord and Savior for healing my Ty and showing my family how precious and short life really is. We cannot spend moments worrying about the what ifs, we have to live EVERY moment to the fullest and every day we should thank GOD for the precious gifts that he has given us. I know that is my plan now.  Thanks to everyone for the prayers and the good wishes, the gifts, the notes and cards, the phone calls, the sweet gestures, and everything else. I am truly blessed with the greatest friends and family.  We are kind of at a stand still now with Ty's healing. I may not have the time to post daily, but I will post with updates when the are available and I will continue to post stories that  amaze me about my wonderful family.

Bad day followed by good day

Well, he is keeping me somewhat busy now so I m having to do a two in one today. Lets start with yesterday.. wow what a day! Although it started out nice, Ty woke up from about a 45 minute nap at about 2:00 pm after only getting about 6 hours of sleep the night before.  I think saying that he was irritable is an absolute under statement. Combined with a steroid that makes him moody and being a normal two year old  who has basically been tied to a bed since Wednesday, we could not put him down yesterday.. he screamed, hit, cried,and everything else you could imagine. I felt completely helpless. We both tried to stay patient and not get frustrated but it became very hard. One thing that I overlooked about the whole situation is the discipline aspect. You torment yourself because you think, well I don't want to discipline him right now because of course he is upset, with good reason.. he just had brain surgery, BUT then you think, well what is going to happen when we get home? Needless to say, we choose to pamper right now and deal later. The docs finally gave him benadryl and tylenol to try to calm him down. He finally fell asleep at 7 and mommy and daddy were quickly after. Ty slept from about 7-7 and has been the happiest baby today. This morning, they clamped his drain. This means that he is hooked up to the drain but it is not being used, so he can move positions, we can play with him, hold him, etc. WOW what a difference that makes!! He hasn't stopped laughing. We also had some great friends stop by and that perked him up even more. If all goes well, we actually may get out of here by Saturday. As far as today goes, his day will soon turn sour when the IV team comes back to put one more IV in him as he is to have one more follow up MRI on his spine this evening, followed by a CT Scan tomorrow morning. What a brave little boy I have! 4 MRI's, brain surgery and a CT SCAN.. How crazy is that?  If I don't blog tonight, you will know it is because I am consoling a sweet baby boy tonight :-)

Good News

Well, it took me about 20 hours to long to write this post, but for some reason, I have been a little busy. We got the good news yesterday that the pathology came back and Ty's tumor was benign, and the original diagnosis. Praise God!I have never received better news. I can't believe that over a week ago I was stressing about his milk allergy and thought that was our biggest problem. If you know me, you know that I am the biggest worrier on the planet. I told Casey today that this should really keep my worrying in check. This proves that no matter what you worry about, it doesn't prevent it from happening, nor does it make it any easier to handle... so my CHALLENGE is to have complete and utter faith always and not worry about the uncontrollable. God always provides, as he did for us with infertility and now  our son's health. Beth Moore has quoted often about how God's plan is perfect and how true that actually is. As I think back to the previous year before we got here, I think about all the ups and downs and about how it led us here. Last year, we had 2 miscarriages, one of which was recent (October). I don't know how we would have gotten through this with a child on the way or a newborn. In February, we decided to sell our house and move to Madisonville. In doing this, we freed up a mortgage and a car payment, as well as moving to an amazing town with loads of supporting people. Lastly, before I took the job at Prosperity I was due to go to London with my mom and sister, however did not have the vacation to do this with them since I took a new job. THEY LEFT SATURDAY.  All of these things would have had some kind of burden or role in us being here, had they not happened. My point is this, so often we question why things happen, especially the bad. Well, I won't allow myself to ever question now because I know good and bad, God has a plan for everything.  I don't yet know how Ty's health fits into his plan, but it is not For me to know, just accept. I have to close today with a positive note about his improvement. He took monumental steps today at PT. He walked on his own about 5 or 6 steps and played for 30 minutes in the playroom. With the exception of balance, he is on his way to a full recovery.

Day 4, Much Improvement

Well, we started this morning off at 6, like we do every morning, with the residents coming in to check on Ty (who slept great by the way). This was a little discouraging because they said that he was still draining alot of fluid. Sometimes it tapers in a few days but sometimes it does not.. if it doesn't, they would have to go in and put in a shunt. Although, this is more of an annoyance than anything, I just really don't want to put him through anything else. Kids eventually grow out of them, so they have to be replaced. Playing sports would probably not happen as well if he has a shunt, which I think broke Casey's heart. I decided that I was not oging to allow myself to get down about this, because again, if this is the worse we have to deal with then we will deal. However, Ty's Neuro Surgeon came in and basically said "Don't listen to those guys" he has only been out of surgery for 4 days and he will avoid a shunt at all costs. I guess we will just take it day by day and see how that goes.
After I took a much needed cuddling nap with my little miracle, I had some great friends come by today and both got to see some great improvement with Ty while  the PT and OT.  (When I say PT, I am referring to Physical Therapist and OT, Occupational) First, the  PT came by and had us walk Ty to the play area. Now, this was while he was sleeping, so as you could guess, he was very opposed at first. ( My only complaint is there is no set schedule, so we are not always ready for them when they come in) He wouldn't really walk to the play room but when we got there his eyes lit up and away he went. Now balance is still very much an issue, but he improved drastically. For me, I have to remind myself to hold onto him when he is walking, which is very hard because he has been doing it for so long.  Although he was still somewhat clingy during this, we gave him the option of taking some walking toys back with him and he decided he wanted them all. He pushed a truck all the way back to his room while holding my hand. The interaction with the OT was pretty much the same, however, there was no hesitation from him. His confidence had defnitely increased. His balance was still slightly off, (below his confidence even) so he was trying to go a little faster than he is capable of at this point, but I love to see his go getter attitude. It is funny to see how each day brings a totally different challenge. Yesterday, our challenge was getting him out of the bed and today our challenge is keeping him in the bed.  I probably should have explained this yesterday, but since he has a drain, he needs to be sitting or lying down in the same spot. If he moves slightly, no big deal, but if he moves more than slightly, he has to be readjusted... this makes him very irritable because he wants to be held, lay down on us, get up, etc. Also, the more he screams and cries, the more he drains fluid .. We just have to take it day by day. All of the doctors talk about how excellent he is doing, which is such positive feedback for sure.

Day 3 Continued...improvement

Okay, well besides the major fit he just threw and refusal to lay down by himself in bed, this evening was definitely better. As I mentioned in my first post, Casey and I were going to have some one on one time working with Ty, which is exactly what we did. We sat on the floor with him and played. At first he wasn't interested at all and just laid there on Daddy, but after a few minutes started to have some fun. We let him hit and kick some balloons, which he did remarkably well, as well as some additional playing.. throwing a ball (YES) and some coloring. He then decided he wanted to take a break. He asked for his favorite drink, a root beer, so I decided to use this as bribery. I made him walk to it and that he did. Granted, it was wabbly and only 4 steps, but he did it several times and smiled while he did it. I definitely see improvement and look for a better day tomorrow. His personality, aside from a few meltdowns (possibly due to the steroids they have him own) and definitely from all the equipment hooked up to him, is still definitely in tact. He is still my Ty Ty and still the funniest most adorable boy I know.

Day 3 post brain surgery

Well, this weekend was a wonderful weekend, considering. I had to remind myself occasionally that Ty had brain surgery. He played and laughed and did so well (all in bed of course) 6:00 am arrived Monday morning and the crazy day started. First we had the residents in, followed by oncology (just to tell us still no pathology results) followed by occupational therapy, internal medicine and then Physical therapy. I think I was so spoiled by the doctors telling me how great Ty was doing, I expected him to breeze right through OT and PT, but that was not necessarily the case. OT got him out of the bed. He moved his arms and legs, but cried the whole time... not necessarily from pain, but from fear. As a mother, I don't know which is worse. They got him, rather forced him, to walk to his daddy, which was about 5 steps while they held his hand... this was very hard to watch. My 2 1/2 yr old who was just running at his nana and papa's house is now holding someone's hand to take 5 steps. Again, I feel that this is due to fear and not can't do. The PT results were basically the same, although, this time, the 4 steps were by himself. After they left, he was allowed to sit in my lap and play, which was a nice change. However, after sitting in my lap, it took a long time to get him to go back in his bed to lay on his own.  We were told that we could work with him on our own at night for 30 minutes at a time, so I definitely think with just mommy and daddy there, he will be more apt to do what he is capable of doing. As I sit here writing this, I weep a little, wondering how all of this has happened, but then I remember how absolutely perfect GOD is and that if my only struggle is to get him to walk and play like a toddler again, then I am truly blessed.  We have been surrounded by friends, family, a fabulous medical team, and our almighty GOD and they have not left our side. Although, I feel I should be stronger at times, I could not have been so strong without any of these people. I think my posts will continually show progress and I can't wait until this blog turns into a personal blog about Casey, Ty and I and our lives and that is it. Granted, we will have our occasional MRI's and mommy's all the time worry, but we won't always have this struggle, that I believe.  I know that "With God, All Things Are Possible" and I have the greatest example laying in the bed sleeping..