Back to school

Morgan's first day back at school was a little rough. She had a tough time sitting still and getting back in the routine. She is used to having her morning run and jump everyday, and she didn't get to do that. They do take them outside, but not until later, and the first day, it rained. However, they are finding what works for her to get her to sit and attend to activities. They use her compression vest which seems to help. Our little girl has come a long way in the five months since her surgery, but still has a long way to go. I am very thankful that she is doing so much more, even if it is being into everything. At least she is not sitting in a corner stimming on a zipper all the time like she used to. Yes, she requires a lot more energy and work, to keep her safe from climbing on everything, but she is stronger now and is exploring. I went to check on her in her room yesterday and she was sitting on her swing, swinging by herself! That made my day.

First Day of School

Not ready for traveling yet

This weekend, my family went on our annual vacation to Horseshoe Bay. The first few hours went good. My parents kept the kids Friday evening while Billy and I went to a concert with my sister and her husband. Billy and I were talking about how calm Morgan was and that it was nice to be able to go out and do things and to go places. Then, we got back to the hotel, and everything changed. Morgan would not go to sleep. She was wide awake at midnight and Billy had to take her home. Thankfully, we were only 30 minutes from home. She went right to sleep when she was in her own bed. All this really saddened Billy and I. Once again, our family was split up. Billy and Morgan came back for the day on Saturday and then went back home again that night. Through it all, I have to look at the fact that she was out of her routine, out of her comfortable environment, and over stimulated with new activities, people, sights, and sounds. She actually tolerated the day on Saturday fairly well, considering, until that night. I had pushed her past her limit by Saturday night and the meltdown happened. Now we are back home, and she is happy. She still climbs on everything and is constantly into everything she is not supposed to be. It is nonstop. How can a person go and go that much all day without ever slowing down? School starts this week and my prayer request is that she will be able to sit and attend to tasks to be able to learn.

Closing one door, opening another

So Morgans last day of outpatient therapy was Monday. We were sad, as we will miss them. They have helped Morgan so much. They were there with her to help her recover after her surgery and to regain strength and function that was lost at first. I will definitely keep in touch with them. They said they would always be there for us for any questions and possibly a reevaluation in a few months if necessary. We look forward to her returning to school next week where she will continue her therapy there. It will be good for her to get back in the routine. Also, next week, our wonderful nurse will be going to school herself to become an RN. She will still work part time with Morgan. Hopefully, our nursing agency will find us another nurse for the rest of the time. We are praying for that perfect nurse, just as He has provided for us before.

Morgan and her fabulous team of therapists!

The story behind Morgan's tricycle

Yesterday, Morgan received her very own brand new adaptive tricycle, custom fitted to her. Therapeutic adaptive tricycles are for those unable to ride a standard bike or tricycle and allows them more independence, while helping to increase their strength, mobility, and balance. The heights, length,, foot pedals, and handle bars can be adjusted. The foot pedals have straps to hold her feet on. There are also straps to fasten around her trunk. It came with a helmet and a personalized license plate! So Morgan is a very blessed little girl. Her Terapists helped her to get it by first evaluating her need for it, taking measurments, and filling out an application. She qualified for the trike and was put on a waiting list. A wonderful organization called Ambucs raises money for the trikes. We are so thankful. She now has one of her own that she can ride everyday. It is so therapeutic. Her school also has one that she can ride when she is there. So Morgan has a lot of equipment now and a wonderful team of therapists to help her. Sadly, tomorrow will be our last day at Cedar Park outpatient because Morgan will be getting therapy when school starts.

Morgan's New Tricycle!!!

Big smiles from her doctors!

Morgan had a great appointment yesterday. Dr. Clark was all smiles when we told him all that Morgan is doing now. He proudly told his nurse and Dr. Lee when they walked in. "She plays chase and hide and seek with her brother now." And he was even more excited when we told him "No seizures!" He said we could go ahead and reduce her completely off one of her medications, so she will just be on one! He said just continue with that one until we see him back in three months. Dr. Lee, her neurosurgeon said "she looks great!" He released her from his care! I did ask them both questions about her behavior changes and new emotions. They said this was a good thing. She is expressing herself. However, hyperactivity could be from the medication. Dr. Clark said if need be, we could increase her nerve stimulator as it can help with behavior issues. So maybe if at next visit she is still hyper, we can increase it. I asked Dr. Lee why she holds her head all the time. He said it was most likely that she was feeling the nerves growing back. So both doctors were very pleased, and so are we! Praise God for all He has done, for guiding us to this amazing team of doctors and for healing her!

Follow up appointment tomorrow

Tomorrow is Epilepsy Clinic with Dr. Lee and Dr. Clark. Looking forward to giving them a big thank you for helping our precious girl. I have my questions ready too. Hopefully we can continue to reduce the seizure meds because she is doing so well! Want to ask Dr. Lee why she still holds the right side of her head, what is she feeling? She also has more sensory issues. She is just nonstop active. Every week is different with her behavior, emotions, etc. is this just part of the healing process? She has always had some sensory issues, but it seems so much more so now. She just is nonstop seeking sensory input. We are trying everything they have suggested in therapy, the pressure vest, weights, deep pressure, etc. It is helping some but it is wearing me out. Again, I am thankful for her progress so far, just want to know how we can better help her get through this phase.

Accepting and Adjusting

So I have been doing better at accepting the fact that I don't get much accomplished around the house right now, and that's ok. What's most important right now is time with Morgan and Will and keeping Morgan safe. After praying this morning that God would give me a good attitude about being home today and have the right "method" behind the daily chores, I discovered something that really works( at least it did for today and praying that it will continue). I had said in my last post that Morgan is all over the place, climbing on EvERYTHING. We are constantly on our feet, getting her down and off of all the furniture. Makes it extremely difficult to turn away even to do the dishes or throw in a load of laundry. I discovered something she really likes to do, bounce on her therapy ball. I sit on there with her and hold her, and we bounce...and bounce...and bounce. We bounced about 45 minutes this morning. It is something I can do with her, not too strenuous, but does give me some exercise, and I get to hold her. After doing this, she was more calm, entertained herself, and didn't climb for about an hour or so while I could get some things done. How awesome that I could do something with her that we both enjoyed and it gave her that calming input that she needed so she wouldn't climb and stayed out of trouble for awhile. Also learned this week, that if we have to go to the doctor, putting her in her stroller while waiting in the lobby, really helps. We had to come up with something different because she would flip out, become a different child, scream, and throw herself on the floor when we were waiting at therapy or at the doctor. So the other day when I had to take Will to the doctor and she had to go with us, I put her in her stroller and she was so calm, even though we had to wait about 30 minutes! Another huge accomplishment this week: I took both kids with me to the store in Austin and I survived without pulling my hair out! I don't think I have even attempted taking both kids with me to the store more than about two times ever. I have just now started taking Morgan with me to the store. She has her limits, but does pretty well. I just put her in the basket and she is happy if we stay moving, and I have snacks. The other day, Will helped me give Morgan snacks and keep her entertained. So proud of my precious children and that I was able to do something normal like going to the store with them!

Progressing in therapy

On Monday, the therapists challenged Morgan by putting her communication book in different places, behind her, on her left side, on the floor, etc. to progress her in her communication. The next step in the PECS picture communication is for Morgan to go looking for her picture book when she wants to tell us something. They have the object she wants in front of her, but she must give the therapist the picture of it first before she gets it. She was challenged by having the book out of her sight, but did well when looking behind her and to the left to try and get it. I have been working with her on signing some. I help her to sign the word "more" when she wants more of some activity she is doing. She really is motivated by jumping and is starting to sign "more" by herself to get to jump some more. We are still being challenged very much so by keeping Morgan from climbing on all the furniture in our house. Our living room is definitely a place to keep her safe and not a place to have my furniture arranged nicely. Chairs are pushed against the wall, padding is on the fireplace hearth, the ottoman is sitting in recliner. Yesterday, she was standing in the recliner and pushing against the back of it and almost tipped it over backward! All the prayers for improved motor skills have been answered, so I am thankful. Just need prayers for energy to keep up with her and to watch her every second.

Watching Over Us

I have been thinking about all the ways The Lord has taken care of us along this journey. One of the main ways He has supplied our need has been with Morgans nurses. We have been with a nursing agency since she was two. We discovered that there even was such an agency that Morgan would qualify for, through the direction of the ECI program(Early Childhood Intervention) where she received home based therapy. She qualified for 32 hours a week of nursing care. This enables me to be able to work part time, and know that Morgan is taken care of. The nurse goes to school with her when she is in school, and comes to the house when not in school. What I am so thankful for, is that God has provided the perfect, most caring and compassionate nurses for Morgan. The nurse we have now goes above and beyond. She really cares about Morgan and is always coming up with new things for her to do to challenge her to help her learn and develop. She has really been creative this summer. She rearranges our living room during the day, and turns it into Morgans activity room. She made her a ramp to climb, got her a therapy ball, a standing cushion, some books, and some weights. This is the nurse we had when Morgan was two, but she had to quit for a couple of years to stay home with her own children. We did go a year or so with several different nurses that didn't stay long because they were driving from Austin. Then we got another wonderful nurse that just adored Morgan also. She would do anything for Morgan as well. She had to move when her husband got transferred. This was right before Morgans surgery. Yes, it was stressful to think about not having a nurse after Morgans surgery, but God provided! When I called the agency, I asked them to please just see if our nurse from before, that kept Morgan when she was two, would be willing to come back to work. She was! She came back to work just for Morgan! However, she is going back to school to become an RN this fall, so we will need another nurse during this time. But I know The Lord will provide again!

Where she was and where she is now: Her Balance and Motor skills

I had said in the last post that I will be reflecting on where she was prior to surgery and comparing to where she is now. It helps me to truly reflect on the miracle of healing that has occurred in her. I got out some old records from her school teacher. She recorded the amount of times a day that Morgan fell down. She recorded for a couple of weeks. This was in February of 2012. For several days, she had fallen about 15 times during the school day, but for some of the days, it was 30. There were two days where she fell 55 times and the comment from the teacher was " we lost count after that". I was in tears as I remembered how sad I was during this time. It literally broke my heart. It is good to write it down now to express how I felt. But, this is now in the past!! So now I rejoice and rejoice!! She is a new, healed little girl now! Yesterday, the teacher videoed her going up the stairs of the playscape, climbing to the slide, sitting down, and sliding down, all by herself!! Praise God! I had often painfully watched other kids do this, dreaming of her doing it one day. And now she can! And she had fun doing it! God is so good!