The day after surgery

On March 21st the day after surgery Kayla did very well. After I woke up Mike and Jessica came to visit but Kayla was still asleep but when she woke up Physical therapy came and got her out of bed and put her in a wagon and took her to the play room. Kayla played with some toys in the wagon for a while and then we brought her back to the room for some breakfast.... she stayed in the wagon for a pretty good while and then we put her back in the bed..... We had a visit from a few friends from the Facebook support group and It was a very good visit, it was very nice to meet them..... Then physical therapy came back in and did some exercises on Kayla.... I managed to get a shower and a bite to eat and some coffee lol.... then we had a visit from the social worker and later had a visit from a sweet lady that goes around to childrens rooms and makes them bracelets and earrings and Kayla got a pretty little bracelet made just for her from that lady and Jessica got some earrings made by the lady then Mike and Jessica went back to the HP house for a while..... Kayla wanted to get in her wheelchair after the lady left that made the bracelet and Mike and Jessie had already left so I called a nurse to help me and we put her in her wheelchair and off we went to the play room again..... Kayla played for quite some time and then Danielle came with the shoe sole that goes on the bottom of Kaylas fixator and the little brace thing that Dr Standard made to keep Kayla's leg straight, they had to modify it because it was very hard to get on and off of Kayla, so we went back to Kayla's room and Danielle put the sole on the bottom of Kayla's fixator and then Kayla watched Dora for a while.... Mike and Jessica came back over to see Kayla and she sat in her wheelchair the whole time and watched Finding Nemo with her dad.......... She eventually started falling asleep in her wheelchair so we had to put her back in bed and she woke up and stayed awake for a little bit and then went back to sleep..... Now she is sleeping comfortably and I need to be sleeping myself lol..... will update again soon and I may even add some pictures.....

Surgery day and after.....

On Wednesday March 20th we got up at 5 oclock A.M. and got ready. We had to have Kayla to the hospital by 6:30 to sign in and get prepped for surgery. We left the HP house around 6:16 or so (not sure exact time but I do remember looking at the clock at one point that morning and seeing 6:16 lol).... We got Kayla to the hospital and got her registered and headed up stairs to the 4th floor for surgery. The lady at the front desk of the 4th floor gave us a card with a number on it for Kayla. the number was 1911 and when they needed Kayla for anything they would call her number instead of her name. It didn't seem like we were there but about 10 minutes when they called Kayla back for surgery. They go her prepped and around 8:20ish (again not sure of exact time loL) the Dr came in and explained everything he was doing during the procedure and he also explained that some kids having Lengthening had been eventually having trouble out of their knees and he wanted to prevent that with Kayla so he was going to construct something either waterproof or removable that would hold Kayla's leg straight mostly of the night to prevent her from bending her knee and keep her from having any issues with the knee later on. He then left and said he would start the surgery in 20 or 30 minutes but that turned into over an hour and they didn't take Kayla back for surgery until about 9:45ish. They let me go back to the OR with Kayla until she fell asleep and of course after she fell asleep I had to leave. I cried when we were in the OR because I just really didn't want her to have to go through all this. When I got back out to the waiting area Me mike and jessie went to the HP house to put Kayla's things in our room then we went to eat breakfast and then we went to our class with Nurse Lee so we could learn how to turn struts, and learn how to do pin care and learn how to follow the schedule for strut turns... then we went to the gift store to get Kayla a few things and Mike and Jessie went back to the HP house to rest a little while I went back to the waiting room to wait for Kayla to get out of surgery. they had originally told us it would take about 5 or 6 hours from start to finish which included prepping, surgery, finishing up and recovery but it didn't take that long at all, it only took around 4 hours. They called me a few times during surgery to let me know that Kayla was doing good and I really like that they did that. Dr. Standard came out and talked to me after the surgery. he told me that Kayla did real well and had very little blood loss.... He explained a few things and also told me that he did make a removable device that we could bolt to the fixator frame to hold Kayla's leg straight to keep from having any knee issues to arise...... Jessie and Mike came back to the hospital and they called us back to recovery to be with Kayla. They would only allow two at a time to go back so Me and Jessie went.... Kayla was crying when we first got there but calmed down a short time after. I stayed in recovery with her for a while and then I went back out and let Mike go back to see her...... I went down stairs and had some lunch then went back up to the waiting room to wait.... Mike called me just a short time after and told me they were getting ready to take her to a room in the childrens wing..... We got her to her room and got her settled and she did real well the rest of the day but that night she got a little sad because she wanted me to get her out of the bed and hold her and wanted me to sleep in the bed with her and I had to explain to her that I couldn't do that because she had the catheter, epidural and IV..... She calmed down just a short time after and went to sleep......

A little update.....

Sorry it has taken me so long to update.... I know most of you have probably already seen my updates on Facebook but I will update again here anyway...... The last time I updated I told you guys there was a problem with the insurance and Kayla's financial assistance but just a couple of days before we were to leave for Baltimore for surgery I got a call from the finance manager telling me that Kayla's financial assistance had been approved.... She was still waiting on word from the insurance company about weather they would sign the agreement contract but since she was approved for financial assistance we could go ahead and make the trip to Baltimore for surgery..... A very big Prayer answered...... The LORD is so good...... We left the house for our trip on Saturday March 16th. We drove a little more than Half way to Baltimore (making several stops along the way for gas and food) and then we stopped in Stauntan Virginia at the Days Inn we usually stay at and spent the night..... It is such a long drive and so tiring to drive all the way through so we take the trip in 2 days. The next day on the 17th we got up and got back on the road after gassing the vehicles up and grabbing a quick snack and we drove the rest of the way..... We made it to the Hackerman Patz house where we are staying at the whole time we are here at about 3ish that evening (not sure the exact time lol)..... We got settled into our room and called for pizza delivery from Pepe's..... The next day on the 18th we got up and got ready for Kayla's appointment at the Rubin Institute. We left the HP house a little early so that we could go to the cafeteria of the hospital and eat a quick bite of breakfast and then we headed to the RIAO to see the Dr. Once we go there it didn't seem like no time till they called Kayla back for xrays and then after that it didn't seem like no time till they called Kayla back to a room. But once in the room it was a waiting game. I thought we were going to see Dr. Standard that day but we saw Allison the Physicians assistant but I didn't mind because Allison is awesome to lol..... We talked to Allison for quite some time and she explained to us mostly everything Dr. Standard would be doing to Kayla's leg during surgery and she answered all of my questions and showed me on a model how to turn Kayla's struts when it comes time and we talked about the schedule I will have for strut turning. I felt better after we left there but was still nervous about the surgery. Later that day we went to a grocery store near by called Giant food store and we got a few groceries but not alot because they were expensive lol and I knew we would be going to Aldi's the next day anyway so I just got a few things to hold us over for a while..... We got back to the HP house and I cooked supper and we just relaxed the rest of the night. The next day on the 19th we got up and traveled to Reisterstown Maryland and went to walmart and got some necessities and a few other things, then we went to my cousin Chasity's house for a visit, It was a wonderful visit.... We ate supper with Chas and her family and had good conversation. It was great to get to see them again...... Then we left there and went to Aldi's and picked up lots more groceries. At Aldi's you have to bag your own groceries and you also have to provide your own bags and if you dont provide your own bags you have to buy bags from Aldi's so before we left for Reisterstown I had mike to drive me to Giant Food store to buy 7 more Hot Cold bags that I had already bought 3 of the previous day to bag our groceries in and the bags were great. They even zip across the top so your groceries wont fall out of the bag. I am going to start taking them to all the stores with me here and when I get home to keep from bringing all those plastic shopping bags home and just having to throw them away...... But anyway after we left Aldi's we got back to the HP house and got ourselves prepared for Kayla's surgery the next day..... We didn't get in bed until after midnight and then had to get back up at 5 oclock in the morning so we could get Kayla to the hospital by 6:30 that morning.

A few snags along the way

We only have 3 weeks and 4 day left until we leave our house and make our way to Baltimore Maryland for Kayla's surgery. I have been trying to make sure that all things are taken care of before we have to leave so I called the Rubin Institute to make sure that everything was taken care of on that end with Kayla's insurance and her financial assistance BUT have ran into a few snags along the way. The necessary paper work for the insurance and financial assistance had not even been submitted to the proper places when I called them last week but since then they have been submitted and are being processed and It is looking like things are going to be taken care of before time for us to leave for Baltimore. I hope things do get taken care of on that end because if they are not we may have to reschedule surgery and we don't want to have to do that because March is the best time for us.... I just cant believe it is so close to time for the surgery. The closer it gets makes it more real and makes me more nervous. I was so overwhelmed today that I just cried. On a brighter note, we have had lots of donations for Kayla and have had a few successful fundraisers and there are more fundraisers scheduled for her before we leave for Maryland so it looks like we will have the finances we need to make the trip and for the 3 month stay and maybe even the other two trips we will have to take this year to have her fixator removed and to have her cast removed.... I am having trouble dealing with the fact that 2 weeks after Kayla's surgery my husband will have to come home and we will not get to see him for 2 and 1/2 months except through web cam chats. My girls have never had to go that long without seeing their daddy and I don't thing I have been away from him that long either for the 15 and 1/2 years we have been married.... Kayla's birthday is a week and 3 days and we are going to have a birthday party for her and our oldest daughter at the same time on the 2nd of March and I am going to let Kayla play until she wears herself out. we also have my nephews birthday party that day to so Kayla will have double the fun and I hope she does because I want her to have as much fun as she can before her surgery because once she gets that fixator on her leg she will not be able to play like she would if she didn't have it on..... Our oldest daughters birthday is not until May 16th but since we are going to be in Maryland for Kayla's surgery at that time we are going to have their parties together this year. I will be updating soon.... Thanks for reading......

Time for Cast Removal.

Time seemed to fly by and it was time to head back to Baltimore for Kayla's cast removal and then hopefully after that we would not be going back for a while. If I remember correctly we left on June 23, 2012 and took 2 days to drive that long trip. On the morning of June 25, 2012 we took Kayla to see Dr. Standard. They removed Kayla's cast and did some x-rays and said things looked real well. He said we didn't have to come back for about 6 months. They set Kayla an appointment for December 20, 2012 if I remember correctly but we ended up not being able financially to take her for the tip and it was so close to CHRISTmas that we didn't want to make the trip so Dr. Standard had a prescription emailed to us for X-rays and on Dec 3, 2012 I took her for x-rays and shipped them to Dr. Standard via UPS. Dr. Standard had said that as long as Kayla's x-rays looked okay that he would wait until March (spring) to see her. It was about a week later that I got a call that Dr. Standard said that Kayla's x-rays looked wonderful and he would see her in March. We decided to go ahead and schedule Kayla's next Surgery. Dr. Standard had told us before that he would do her next surgery anywhere from 6 months to 1 year after her surgery. They scheduled her for surgery on March 5, 2012 but my husband and I discussed it and he wanted me to have it rescheduled for closer to the end of March so they rescheduled it for March 20, 2012. Now we are just in a waiting game until March 16, 2012 which is when we will be leaving the house and heading for Baltimore Maryland for Kayla's surgery. In the meantime we have been doing fundraising to try to raise the funds that we will need to take Kayla for the surgery and since she is having Limb Lengthening done Me and the girls will have to stay in Maryland for 3 months after Kayla's surgery. My husband will be staying for 2 weeks after the surgery but then he has to come home and work. I have lots to do to prepare for this trip. One major thing is the fundraising. I am also going to have to make a list of things I need to pack and take with us. I have made Kayla 7 fixator covers already and I am hoping they are big enough, if not I will be making more once we are in Maryland after her surgery. I have also Modified a couple pairs of pants and will be modifying more in the next few weeks. I found her 6 full piece outfits that snap closed on the insides of the legs like a baby onesie would and I think they will work real well for her to wear after the surgery. I still need to find her some bathing suites to modify for her to wear in the pool for water therapy and I have lots of things I need to purchase for our stay like Shampoo and stuff like that. Will be updating soon.....

Time for Fixator removal...

Time seemed to go by fast and it was finally time to head back to Baltimore Maryland to have Kayla's fixator removed. If I remember correctly we left the house on May 30, 2012 to head to Maryland. We drove a little more than half way and found a hotel to spend the night. The next day we woke up and got back on the road and drove the rest of the way to Maryland. Once we got to Maryland we got settled in our room and prepared for Kayla's surgery the next day. The morning of the surgery I was nervous but excited at the same time. It didn't seem to take them as long this time to get Kayla prepped and get her into the Operating room. It also seemed like it didn't take no time for them to get done with the surgery. Finally Kayla's fixator was removed and she had her cast on. She had a Camouflage cast per her dads request. They called me back to the recovery room and since they would only let two people at a time back to see Kayla, my oldest daughter Jessica and I went back. Kayla was sleeping when we got back there so we just sat there and waited for her to wake up. A while later she was still sound asleep so I decided to go out and get Mike (my Husband) and let him come back and sit with Kayla a while. I was in the waiting room for a while before I decided to text my husband and see how Kayla was doing and he said she was awake and sitting up in the bed eating a popsicle. She seemed to be glad to have the fixator off but also was kinda uncomfortable with the cast at first. They finally released her from the hospital with a shoe to attach to the bottom of the cast because it was a walking cast. The Dr. Said she would probably have the cast on for about 4 weeks and he would then remove it and make it into a removable cast so we could put it on her when she was playing hard or when we think she needed it. Kayla wasn't real comfortable about walking on the cast at first and it took her several days to adjust to it and get use to walking in it but when she did finally start walking on it you couldn't stop her. We finally left Baltimore and made it home and just took things day by day waiting for the day that we were supposed to come back for cast removal which was June 25, 2012. We had the appointment for cast removal before even leaving the hospital the day her fixator was removed.

Glad to be home.

After Driving all day the day before, we had a good nights sleep. The next morning when I woke up I was so thankful to be home. I didn't want to even leave the house that day, I cant remember if I did leave the house that day but I didn't want to. In the days following I had to get Kayla signed up for physical therapy and just begin the wait. The Dr. gave us a prescription to have x-rays done on Kayla's leg about 4 weeks after we came home and after having the x-rays done I had to send them via UPS to Dr. Standard and await word from him to see when Kayla could have her fixator removed. During this 4 week wait, Kayla adjusted really well and got to the point where she was running in her fixator when someone would hold her hand and maybe even a little by herself but I cant really remember lol. We went to my Mother in laws alot and she got to play out in the yard when the weather permitted. My Mother in law had a child sized swimming pool that she put water in and let Kayla bath in after she would get finished playing outside and Kayla really enjoyed that. Finally the time had passed and it was time for Kayla's x-rays. We had them done on April 16, 2012. After having the x-rays done I shipped them Via UPS to Dr. Standard and then we began the wait. It took about a week before we were contacted about the x-rays but we had good news. Things were still progressing and the Dr. wanted to take Kayla's fixator off on June 1, 2012. I was excited that Kayla was going to have the fixator removed but I was really hoping he would remove it sooner then what he had scheduled but I knew that the extra healing time was better for Kayla so I did not complain.