natalie-update.org

Life has really been hectic lately! Oh, how you forget all the sleepless nights, diapers, bottles, joys and tears of a little one in the house! Natalie has been really great with Phoebe lately. She will really watch her when we sit them together, and when Phoebe starts to cry or make noises, Natalie will turn her head and look at her and smile!

One day in October, Tricia received a phone call from Natalie’s school. We were wondering what was wrong now, but the most amazing news came to us! They had a walker at the school designed for handicapped children and placed Natalie into it. The walker is specially designed for children that have little or no control of their muscles, so it supported her great. As they placed Natalie into it and started to move it through the halls, NATALIE WOULD MOVE HER LEGS LIKE SHE WAS TRYING TO TAKE STEPS!!!!!!!!!!!!!!!!!!!!! PRAISE GOD, THE FATHER ALMIGHTY!!!!!!!!!!!!!

They have really been working with Natalie on this quite a bit lately, and she has good days and bad days while working with the walker. But, she is moving her legs like she is trying to walk! Sometimes she drags her feet while they push her, and sometimes she will “hop” both legs at the same time, but she purposefully puts one foot in front of the other most of the time!

We will continue to keep you up to date on this, and if this web server had more space, I would love to put the video of it on her for all to see! We I sat down that night and was able to see her on video, I just cried and hugged her for the longest time. It was truly amazing and God is working His miracles, on His time scale, through her still!

WOW! These last few weeks have been really hectic! It all started on Wednesday, 9/1/04 as we were heading to the hospital to “just get checked” as Tricia had several contractions throughout the day. After an hour of walking the hallways, our feet were killing us, so sitting down felt good. But, we didn’t know that it helped with the progression, so they kept us!

After an all-nighter of contractions, moans, coffee and some pushing, little Phoebe made her grand appearance! We are so blessed that everyone was praying for us and that the pregnancy and delivery went so well. We are now home and trying to adjust to the routine of feedings, bottles, diaper changes, etc. Phoebe is a great sleeper, and pretty good eater so far. Natalie just isn’t quite sure what to think so far. We have let her hold Phoebe and she just looks at her and gets quiet, like she is thinking “This isn’t my baby doll!”. A few times, Natalie has been fussy and we have put Phoebe in her arms and she calms down and smiles, like that is what she was fussing for, her turnto hold the baby.

We are very excited and look forward to the future with both Natalie and Phoebe, so please keep us in your prayers for a few more weeks, at least, so that we can get a good schedule down and figureout what is going to work the best with the kids. Thank you all for everything and GOD BLESS EACH OF YOU!

It has been a long time since we have been able to post an update. A lot has happened since the last update. Natalie suffered a broken leg last fall, just after the last update, so through Christmas time we were dealing with a cast and a pressure sore caused by the cast. Natalie bounced right through those times like a trooper, and has been doing great since then.

We had a wonderful holiday season, and as spring approached we became really hectic with Natalies therapies, and fixing the house up. We also found out that Natalie will be a big sister this September! Natalie is really excited and when we ask her if she is ready to be a big sister, she smiles from ear to ear. Natalie has one more year of preschool, which she is starting this fall at Stephen’s Elementary. She really enjoys the kids and activities that she does there and comes home halfway asleep at times from being worn out. She is also attending a program at The Perlman Center this fall for augmentative communication, which is teaching her to work with switches and computers to make selections and learn cause and effect.

Natalie continues to make some progress with her alertness and is growing like a weed! We still are battling the muscle tone issues, and some seizures. We are beginning to work with somenew therapists at a new facility, as Natalie was not working well with her old therapists. We had been going there since her injury and Natalie had become too comfortable with them and was bored, so she wouldn’t work for them. We have just received a new wheelchair also for Natalie, since she had outgrown her old one. She really seems to enjoy riding in it, and seems more comfortable as well.

We hope to be able to keep this up to date more often and we apologize for not doing so. As life had gotten hectic, we had forgotten about trying to keep the site up to date. Thank you everyone that takes the time to pray for Natalie, and us, and for the kind words and thoughts you pass along to us. May God bless each of you as richly as He has us!

We are sorry about the delay in updating this page on Natalie’s progress, as life has been extremely hectic this summer. We have moved into a new home, which has made life easier on all of us. Some of Natalie’s progress since the last update has been remarkable. We played the medicine game quite a bit this summer to get her seizures under control, and have finally found a good medicine to control them.

It has been a couple of months since her last significant seizure! We have still been fighting to control how tight she is with her muscle tone, and are venturing to the University of Kentucky to see a specialist in the field of spasticity for ideas and help. Summer school was great fun for Natalie as she was able to continue making progress with her classmates, and we feel that it has also helped her to not regress. Now regular school is in session, and she is doing really well. Her teachers have heard her laugh a few times, been kicked a couple of times, and have seen lots of smiles. Natalie is still not able to reach out on her own, sit up, or talk, but we see more of her personality come out every day. Her attitude is still in there, as she only will hold her head up when she wants to (or if we are feeding her dinner).

We are currently looking into several courses of therapies that we haven’t tried yet. One is hippotherapy, which is horse-back riding with therapists for children with disabilities. Another therapy is called the Listening program, which uses classical music to help the brain recognize different sounds, and rewire itself for those sounds. Also, a new clinic is opening locally called The Sensory Learning, INC. which uses light, sound and motion all together to help rewire the brain to recognize multiple inputs. We are excited about what the results have been with other children with this treatment, and are anxious for this clinic to open since it is so close to us.

As far as the Hyperbaric Oxygen treatments go, we have reviewed videos of Natalie before she began and since she began those treatments, and have found that she has lost some head control and has become more sensitive to light. We have done 52 treatments so far, and have not seen significant progress. As with any treatment, everything is trial and error, and some help, while others don’t. At this time, we feel it necessary to pursue other treatments and put the HBOT on the back burner for now.

Two weeks ago we had a follow up visit with Natalie’s rehab doctor and expressed our concern about how she seemed in pain, and gaggy quite a bit. A test was done on her stomach fluid, and it was determined that she was very acidic, which was causing extreme heartburn, and could cause ulcers and other problems. We have started a new medicine for acid control, and it seems to have helped greatly. Now she is all smiles, and tolerates her food better.

Natalie has been doing pretty good over the last month. Her seizures seem to have slowed down some, so we are still working on getting them under control and eliminating them completely. We just completed a round of 10 Hyperbaric treatments, and are getting ready to schedule some more in the near future, so keep your fingers crossed and pray that they will show us some progress with Natalie. She starts summer preschool next week, two days a week, and we are looking forward to seeing some continued progress with her attention span from that.

Natalie is still not sleeping very well on some nights, and we have scheduled a sleep study in addition to another EEG, which shows brain activity to see if she is having seizures during the night which might be the cause of her waking up, so please keep that in your prayers for us. We hope to be able to keep this sight updated more often in the future, as much as possible. Thank you all for everything, and GOD bless each of you.

Life has calmed down some in the last few weeks, but not much. Natalie has been having good days, and then bad days with the seizures. Also, we think that she is having them in her sleep due to the fact that she has been waking up several times throughout the night lately. School ends for Natalie on the 21st, and we are enrolling her in summer school, which is twice a week to keep her up with the integration and learning process that they have been working on this year. Also, once we get her seizures under control, we are looking forward to beginning the other therapies that we have had to put on hold, due to the seizures. Keep a prayer for the seizures to stop as if the medicine doesn’t control them, surgical intervention may be required.

We thank each of you for all of your support and thoughts and prayers since Natalie became sick. We know that we couldn’t have made it this far without your love, support, and kind words that have meant so much to us. We praise God each and everyday for the blessings He
continues to bring into our lives.

The last few weeks have been pretty hectic in our lives. Natalie has continued to love going to preschool, and is doing better with taking naps in the afternoon, sometimes. Lucy has gotten bigger and is more crazy than ever. We have been hectic with work and everything else that we have been working on with therapies, doctors appointments, and everyday life.

Natalie has been experiencing some increase in "episodes" where she stares off to the left and then the right, and moves her arms and legs. We haven’t been able to bring her out of these episodes, and when she comes out of them, she cries hysterically for several minutes. We contacted her neurologist and took her in for an EEG, which shows the brains activity, and she confirmed that Natalie is experiencing epileptic seizure activity. This is showing up in the frontal lobes of her brain, and it can be quite serious if it went untreated. Sooooooo, we are now trying another new medicine to see if we can control her seizures before they become more severe and more serious than they are right now. Please pray that the medicines will help the seizures end so that we don’t have to play "go fish" with the medicines to get them under control.

This week is spring break for Natalie from preschool. She has been doing so well in there. She has been picking which milk she wants for lunch by visual choice. They will put the milk cartons in front of her, and Natalie will look at them and stare at the one she wants. To be sure that it is the one that she wants, they take them off of the table, move them around when they put them back up there, and Natalie will pick the same one! Of course, just being three years old, she caved in to peer pressure from here classmates one day, and picked chocolate instead of strawberry.

With all of the hectic scheduling we have right now with preschool, and her regular therapies, we have delayed HBOT until after preschool lets out, in mid May. This is due to the amount of time needed for travel (one hour trip, one way) and trying to fit it into our schedules with Natalie. We are anxious to get started, but it was going to put such a time and effort demand on us and Natalie to try to do it right now. We are taking Natalie to the chiropractor for some visits to see if we can get her back and shoulders straightened out, and she seems to enjoy going.

Natalie has been doing really well lately. She is really enjoying school and has made lots of new friends there. The teachers and other kids love her, and she just eats it up being around them all. We have scheduled our next round of HBOT treatments to begin on March 17th. We will be doing 4 treatments per week, along with her therapies, and school, so please say a prayer for strength for us. Natalie has been growing like a week lately, and recently we have ended her 11pm feed upon the request of her doctor. This has been working just fine, and we don’t even think that she is missing it. She still sleeps through the night, and it has allowed us to be able to go to bed earlier, and catch up on some sleep.

Natalie started pre-school today and she did great! She made so many new friends and enjoyed watching and participating in all of the activities. She seemed to like the kitchen play area the best, but really enjoyed the songs and story time. Natalie is still making some progress, and new medicines that she is on seem to help reduce the amount of "tone" she has in her hands and arms, along with new splints for her wrists. We are beginning another round of HBOT treatments in mid March, so keep your fingers crossed, and say a prayer that we will see another great improvement like we did last time.