New beginnings

Lots of new things are coming our way and I am excited to see how they will change things around here.

Autumn will be getting her wheelchair in about 2 more weeks and I can not wait to see how this is going to open up her world of exploration even more.  We had SB clinic today and I had much to discuss.  We got an appt. with neuro scheduled so that we can discuss doing another EEG on Autumn to see if she's having seizures and if all clear trying to wean her off her seizure meds.  We are starting fresh with her bowel program so hopefully we can figure out what works best for her and get one step closer to being able to control her bowels for possible potty training in the future.  We discussed our concerns with Autumn's cognitive development and they told us to not be alarmed with it right now and give her more time to grow and develop more before being too concerned about it.  They think with all the new stuff she's getting that we may see her cognitive development start improving.  We had to convince and fight a little about getting Autumn some bracing.  We wanted something that would support her from the feet up to the hips but they think she's too weak and small for that bracing right now so compromised with us to get her some AFO's which will give bracing support from her feet to just below her knees.  We are going to try this first and then later down the road see if we can do more or not.  They did a cast of her feet while we were there and we go back in 3 weeks to get them.  It's a start! 

I am SUPER excited about the Dynavox Autumn will be getting sometime in July.  It's a communication device that will give Autumn a chance to be able to talk with us and a way for us to find out cognitively how much she really knows.  We were able to try one out with Autumn and it is AWESOME!!!  It's a small computer screen that will attach to her wheelchair or that we can sit on a tabletop.  It's a touchscreen device but can also be controlled with just eye focus.  Autumn is still working on her pointing so this was simple AMAZING to me that she can use her eyes to work it.  We pulled up a screen of 5 pictures of body parts.  We asked Autumn where the ear is and the pictures will light up when she looks at them and then when she stops and focuses on the picture with the ear it says the word ear.  Have I mentioned how amazing this was to watch?! She DID it!!!  I knew she knew her body parts already but to see her be able to focus on the picture and make is say the word was great.  They said it is actually hard to do with eye control but Autumn picked it up quickly and most do not.  She can also just touch the picture and it will do the same thing.  It has all kind of categories such as family, toys, etc. and we can download our own pictures so that the mommy button will have my face and we can take pictures of her videos and she can choose which one she wants.  This is the perfect way to learn for Autumn since she's a technology junky.  There is also a phone that hooks to it so she can communicate with grandparents.  I will now be able to teach her colors, letters, animals and know is she's getting it or not.  She refuses to use signs or to communicate in other ways but I think this will really be fun for her and something she will love.  I can not wait to get it!

We also had a meeting with the school district about Autumn starting school when she turns 3.  It will be a great program for her but I have some concerns as well.  We just have to pray about what we feel will be the best for Autumn.  There are many options...she can go 5 days a week for 3 hours a day or she can do homebound school or many variety of those things.  At school she would get her therapy services, school learning, and the experience of being around other kids and away from mommy.  I worry how much she will be able to handle and ofcourse about germs in the winter months with her having a trach.  My nurses will have to be with her at all times at school so figuring out new schedules will be another concern.  We won't meet with them again until late August to early September so we have time to see how she improves over the summer and plan before making a final decision.  I'm thinking right now she will do part-time school and part-time homebound and maybe even full-time homebound in the high RSV/flu season months.  The principal already invited me to make an appointment to come in and take a tour to check it out...she will be at the same school Gage and Madison go to right now so that is a plus.

Speaking of Gage, we are needing to get him tested for ADHD.  He was having problems at the first of the school year but we thought it was just an adjustment period he was going through.  We did a Conner's test and the scores were high from the answers we gave but were average for the answers his teacher gave.  He started doing much better and so we just put off taking him to the doctor to discuss the test results.  Well, about the last month or two he's been having struggles again.  I talked with his teacher and she wants to redo her part of the Conner's test because she feels his behavior at school has changed and his scores would be much different.  He has an awesome teacher who is so patient in working with him and tries to redirect him and find solutions that work with his personality.  He's such a fun, happy kid but he just can not sit still and remain focused.  He's taking way too long to do his work. She said he knows the answers but when he goes to write them down he has to concentrate so hard to put it on paper.  It like his brain is in constant fast mode that it takes a lot of concentration for him to slow it down to focus on his work and writing the answers down.  He also has stuttering that comes and goes.  He was evaluated by the speech therapists at school and she said it's not the typical stuttering of a child using their face trying to form the words...his is one of those where he's already on the next words in is mind but stuck on saying the first word of the sentence.  I sent an e-mail to his doctor and she said that we can have a meeting to discuss his results and talk about diagnosis and options.  This will be a new area for me to learn more about and how to help Gage do his best at school and at home.

Lastly, we have taken the first step in the adoption process.  We prayed and agreed to adoption before the Christmas holidays but then Satan attacked and put doubts into my mind.  I went through a long spiritual battle for about 4 months.  Life got HARD.  I had little nursing help, I was not getting much sleep, I was overwhelmed trying to keep up with everything, I was giving myself a pity-party about all I have to go through, I was frustrated with my marriage, I was missing family & friends....yada yada yada.  Satan knows the exact lies to feed me to give me doubts that I really heard God correctly when He gave me the command to adopt.  The entire time though I'm allowing Satan to creep in...God is continously reminding me it's not about ME but about HIM.  It's not my capablities and limits but what HE is capable of and that HE is limitless.  He kept reminding me that HE is the perfect one and HIS strength is what matters, not mine.  Adoption is a HUGE decision and God kept reminding me that I may not understand why He's place this on my heart and commanded me to do but that if I just obey that HE will take care of us.  I can not argue because He always has provided ALL of our needs.  I know though I needed to walk through that battle to get to the peaceful place I am now about adoption.  We were stopped for a few months for a reason and God has given us the go forward now. We took time as a family to really draw to God and each other.  James and I started nourishing our marriage again and allowing God in the center.  We needed a growing time as a family & couple to unite us for this new, exciting journey.  So, we found an agency we want to use, we filled out the preliminary application and faxed it today.  Now we just wait for a response and go from there.  I do have a child I have my eyes on and the entire family is excited about but the decision is in God's hands on which child is to be apart of our family.

Hello?!

*This post was written on April 14, 2011 but it took me 10 days to figure out why it would not post for people to read....after doing some updates the blog is working again*  Easter post to come soon

Hello, is there people who still check this blog to see if there has been an update? I can not believe it's been so long since I have updated. Time flies!

This year has been a hard one for me emotionally. Autumn has been doing great but for some reason coping with everything has been difficult for me this year...even harder than when I was pregnant or when Autumn was in the NICU. I guess at those times I had no time to think about myself and was so focused on Autumn's needs. Lately I've been missing my "old" life of being able to have more freedom and control over what I did each day. It's also been overwhelming living away from my parents, friends, and the nurses that I was use to. Nursing has been an issue since we moved here a year ago and at this time we are fully staffed and I pray it stays that way. James' work schedule has also been a hard adjustment for me. He works 9pm-7am; Fri-Mon. This means he sleep ALL day until about 3:30-4:30pm..that leaves me with the kids all day and homebound on the weekends. I can manage taking all 3 kids somewhere when Madison helps out but being a tween girl means she's not always willing to help out. Gage gets bored and keeping him busy becomes another issue and then Autumn has so many allergy issues that some days she can't even be outside. It looks as though he may be stuck on this schedule for several years. Ugh! In Midland it did not bother me to be home because there was rarely anything fun to do or we would not have the money to do it. Well, here there are endless activities to take the kids to do and we finally have the financial means to be able to do more. School breaks and summer's are great for us because we can have our "weekends" during the week when James is off. It's also hard to find time to just do things for me because of the schedule. So, I think just all of these things added together has been really dragging me down emotionally. I know it's just one of those funks and will get better but I usually shake them much sooner than I've been able to shake this one.

Yesterday we had our yearly meeting with the ECI team. This is Autumn's team of therapist and her coordinator. I've been frustrated with her speech therapist and how NOTHING has improved in that area over the past year. Autumn also has hit the terrible 2 personality and does NOT want to cooperate with ANYTHING!!! I know it's behaviour because there are a couple of things she enjoys and does awesome with but making her do something she does not want to do is pretty much impossible. I get frustrated and then even stop trying to teach her something. She's a rotten mess!!! So, Autumn only has 5 months left with ECI and then we will make the decision on what direction to go next with her. We are getting a meeting set up with the school district to get informed of all our options and what will be best for Autumn. Just thinking about it all makes me sick and want to cry! The therapists gave me tests results of where Autumn falls in age of developmental areas. She is 31 months of age but tests at the following ages for these areas:

Cognitive (Gaining skills & knowledge): 15 months

Communication (expressing & understanding): 14 months

Social Emotional (interactions): 14 months

Physical (use of hands & movement): 7 months

Adaptive (self care & independence): 1 month

I know lots of these are low because they can not count talking, crawling, walking, running, potty training and the type of areas we never really expected her to do in the first place. The things that gets me are the things I know she should still be doing regardless of her SB like recognizing and pointing to pictures & playing with toys. Honestly, I get guilty feelings about this because I know if I worked with her more and was more consistant with her that she would be doing more and start to blame myself. I'm not super woman and feel overwhelmed by all the responsibility I have on my shoulders. I do all the cooking, cleaning, shopping, banking, bills, homework, school stuff, errands, manage all the drs, therapists, nursing, medical supplies, and do all of Autumn's daily medical care...my list can go on and on...I really do control ALL of the household. I have attendant help that allows me to be able to get about half of my things done each week and without it there would be NO WAY I could manage it all. I forget to teach Autumn the basic baby things like colors, animals, shapes. There is just no time in her schedule for the basics since we are focusing the day on regular medical care and therapy sessions which usually take up the entire time until the other kids get home and then it's homework, playtime, cooking, baths, and bedtime with them. I know it's not fair to blame myself but as a mom I feel responsible for all the things she has not achieved yet and I don't want it to be because of me. I accept if she's not able to do those things because of her disability but that is not the case...she can but she needs the consistency and push that I don't always have the time for.

The amazing thing is that I'm blown away that I'm not overwhelmed 24/7 and that I just get this way at times. It proves to me how powerful God is and how much strength He has given me. I do not see how people without faith cope in life's difficult situations. I may have a small breakdown a few times a year, cry, and feel like quitting but I always have HOPE and PEACE knowing my God will get me through this once again. Even last night after the meeting I just kept crying from being overwhelmed but I then I get on the internet and look up all the children with CPS who is looking for a forever home and I want to adopt them all. I laugh at myself thinking, "What in the world are you thinking about adopting with all the stuff you have to deal with right now & how overwhelmed you feel at this very moment?" It's because I know My God has enough patience, strength, and endurance to get me through ALL of this and it's not even hard for Him. I know I fail many times but He has never failed me and know He never will. Without God, I'd probably be on anti-depressants and have given up by now but instead I'm able to have joy even when life seems to be too much to bear on some days.