Days 5-6 and a little surprise!

Today has been an amazing day! I had several awesome God moments today I will share in another post. Grace seemed less tired today, she definitely had some off the wall moments! She has been showing an increase in her use of words, but still had some very unprovoked hitting. Overall, I am noticing an improvement in her behavior.

We are still seeing a lot of hyper activity but found out some super interesting news today! Grace has hypothyroidism! It was brought up about 2 months ago that it was a possibility, but she needed to be tested over the course of several weeks (it ended up being one test, another 3 weeks later and a third test 4 weeks after that). The symptoms of that are typically extreme tiredness and just an overall crappy feeling. Because Grace is kind of a unique case, they think she may just react differently to it instead of being tired (although we are now suspecting maybe her over activity may be a result of over tiredness!) and she certainly feels crappy pretty often! My mother has the same problem (no its not genetic because I am adopted!) and was diagnosed at 14. She was able to tell me about how she felt before she got diagnosed herself. I do not yet know how this will interact with the guanfacine, it seems they may clash with each other as each medication does pretty much the complete opposite thing! We will be meeting with a pediatric endocrinologist, but cant get in until October or November! Thankfully, our pediatrician is contacting them to get the information in order to get her started on the medication now instead of having to wait that long! It certainly puts a twist on our trial of guanfacine! We may need to take her off of it so that we are able to see how the thyroid medication affects her and be able to tell which medication is doing what! I am praising God to have found this out because I feel there is a correlation between her heart, GI issues, and this! Thank you Jesus for Dr. Brown who was the first to put these pieces together!!

God Rocks :)

God Rocks :) I have to say, while in my head I know that I do not need to worry or stress or fear anything because I have a God who will protect me, take care of me, and make my life way more and way better than I could ever do, that doesn't mean my heart felt it. Have you heard the phrase, fake it till you make it? Sometimes in life that is exactly how I feel! I know without a doubt that God is greater than any problem, it doesn't always mean I am running around jumping with smiles on my face. Sure, I have joy in my heart, but not always in the rest of me! The last few weeks have really taken a toll on me! I haven't been sleeping, I am struggling to try to fit in work, kids, a newborn, school, and cleaning my house! I pretty much feel like I have flopped at all of it! I have just felt so overwhelmed and unsure of everything. I feel like I am praying for peace that is just completely out of my reach. I know you have all felt the same way at times too! Ecclesiastes 3:1-9 is by far my favorite section of verses in the Bible. There is a time for everything and everything has its season. It is important to realize when we feel lost and alone that it is just a season. There is a time and purpose for all of it. I have kept on telling myself that, I know it in my heart, but it is just so hard to still walk around and not feel scared to death about whats going to happen next?

Then I had several thoughts today that just brought true smiles to my face and made me say Thank You God!

1. I have a 10 week old baby who has consistenly now slept till 5-7 am for almost a week!

2. All afternoon Grace was able to play without any meltdowns!

3. A big form of assistance we needed not only came through, but came through at 3x what I expected!

4. Hope has gotten on a great schedule and is proving over and over to be a very easy baby!

5. My husband loves me

6. God loves me!

7. I have a church family and friends! Not just friends that are casual friends, but real ones I call to tell the great and bad things about my life!

8. Emma got to come for the weekend and for the first time in a long time I was able to just spend some one on one time with her! She is an absolute joy, incredibly smart, and the most perfect daughter anyone could ask for!

9. See above and thats all my kids :)

10. Even though Grace is not an easy kid, because of her I have made some amazing friends and connections that allowed me to help other people as well!

And the best of all one yet :) It is easy to allow myself to separate from my emotions. I am quick to put up walls. On Saturday night I was reminded of something very very awesome and a moment in my life where God's presence was SO tangible I could just feel his arms around me!

When Emma was a baby, there was a phase (2ish months although really at the time it felt like forever!) where she would sleep 12 hours at night, but scream ALL day. The crappy thing was.... I was working 3rd shift! I actually would go 2-3 days at a time without getting any sleep. If you know me at all, let me tell you, thats not cool! I just flat out do not handle not getting sleep! I was literally at my wits end and completely ready to lose it. I would call Aaron (who lived in WA at the time) just bawling I was SO tired! I had just begun to attend church with an amazing woman of God who worked at Timber-lee. She really and truly changed my life! She passed away several years ago due to cancer, and I still think of her often! She took me out to lunch after church one Sunday. During the service she had recommended I take her up to the pastor and ask him to lay hands on her and pray for her. Something I had NEVER done, but I did it. Her and another friend were taking turns holding her so I could eat a meal in peace afterwards. I commented that she seemed to relax when Cathy had her and she must have the magic touch. Holly said to me, "Cathy is a prayer warrior, she is praying for Emma." Holly then walked me through a prayer to pray for her. I would do that from then on when Emma cried, it made such a huge difference! I can remember walking around after Aaron and I had gotten married, just holding Emma with my hands on her and singing worship songs and praying for her. I did the same thing a few weeks ago for Hope when she was screaming one night and I couldn't seem to calm her down. That was also the first night Hope slept through the night :) One of the songs  I use to sing to Emma is one we sang last Saturday. It just brought back such a feeling of calm. Tomorrow may be a whole new day of learning to let go of my unhappiness and sadness and frustration. But for today, I just remember that God DOES give peace, and when I cant find it, its only a season until I get it back again.

Day 4

Ug! Is it Friday yet? Or better yet, is it time for school to start up again?!?!? Grace has been getting up at 6:30 am, we are trying to teach her to come upstairs to our room when she wakes up instead of screaming for us. Its taken her a while to actually do it, and its great she can get herself up now, the downside is she would stay in bed for up to an hour after waking up, now she is up in my bed! She did great this morning letting me go back to sleep while she watched cartoons in our bed (usually she is kicking me and rolling around and telling me to wake up!). Unfortunately, once we were all up and moving it was just one meltdown after another! We have been putting her in her room when she hits or starts to scream. We are trying to stay consistent with that (she is actually starting to stay in her room!). We also began today taking away toys when she throws them and then she has to earn them back with good behavior. Unfortunately by 11:00 she had had every toy within throwing reach taken away from her! Completely unprovoked hitting, obsessing over the computer, tv, chips and gum! None of which she was allowed to have for one reason or another. We finally managed to get some food for lunch into her happily put her in bed! She screamed and cried for almost an hour before going to sleep ( we never did verify if she actually went to sleep!). She woke up as soon as I was home from work, but the afternoon went much better! She was able to play with her playdoh and pick it up and put it away. The same with her Littlest Pet Shop. She was getting angry at part of her littlest pet shop, but when I pointed it out to her she was willing to give me the piece making her mad! She ate dinner, watched some movies finally and we got her in bed at 7:00 and on time for once! She is calmly in bed with her new sippy cup, paci, and listening to music.

She was definitely much more tired today. We are in that in between stage where she doesn't want to nap, but she still kinda needs one. We do go through spurts like this where she doesn't nap very well. I don't push it like I normally would, because come fall she will have to go without a nap due to her school schedule. Having some more structured play time in the afternoon as opposed to the just hang out schedule in the morning made a big difference with her! I do feel she is being more verbal with some of her wants, but I also feel her aggression has not only NOT decreased, but has actually increased! The same with her temper tantrums and meltdowns (there is a very definite difference between the two! All kids have temper tantrums, NOT all kids have full on meltdowns!). We have the option to increase the medication slightly beginning tomorrow, but we are going to keep her where she is at, I think she needs to have more time to adjust to where she is at with it, before we are willing to consider any changes to it. So far, I don't feel like it is doing what we want it to, but I feel like we need to make sure we give it enough time! I have seen some positives the last 4 days! She is accepting a new sippy cup pretty well, language is increasing, going to bed is becoming easier, and she is able to sit and just chill out. The negatives so far are still increased aggression, meltdowns (there is no change in her ability to "regulate" herself), and still a total inability to accept no (she gets fixated on items and cant let them go). She is also definitely more tired than normal, but it is not excessive. Tomorrow we are going to try having more structure to her entire day and see how that goes!

Day 2-3

The morning started out very difficult for Grace! Our internet was not working and so she couldn't watch cartoons on the computer she likes to watch. I will say she did do a good job of telling me why she was upset. She was much more verbal about her frustrations instead of just screaming. I cant say if that was the medication, or she just chose to tell me. She went swimming with her sister in the morning and the two of them had the pool to themselves and loved it! She did still do a lot of hitting throughout the day, and we still had a couple good sized meltdowns. She seemed a little tired today and also was thirsty. Her naps were still normal length. She got very clingy during children's church while we were at church in the evening. That is very unusual for her! She LOVES to go to children's church and normally all through the worship service she asking over and over if it is time to go yet. She played a V-Reader during worship (actually kept her pretty calm and contained!) but then got sad after and wanted me to stay in children's church with her. I was able to sneak out about 10 minutes into it and she was fine. Bedtime was VERY hard as we lost her sippy cup somewhere between our house and church, but again, I did notice while she still got very upset she was much better about verbally telling me why. Tomorrow will be another day!

Since it is about 15 minutes till her bedtime and I just finished our day yesterday, I may as well add today! She had a pretty rough day. Her aggression has actually seemed to increase :( Although she also goes through spurts when she does get more aggressive, and the last few weeks she has been escalating a lot with her behaviors! She was definitely tired today, and that may also contribute to her frustration. Congo has been wanting to be around her when she is upset, but he desperately needs to get some more training in him (which shouldn't be the case had he been trained like he was supposed to have been trained in the first place! That however, is a whole different story!). She fell asleep in the car today, and took a full 2 hour nap at home. I am also seeing an increase in some of her obsessive behaviors. Again to early to tell what from! On a good note (great note even!) she chose not to get another sippy cup like her green one (that cup has been her security and calming tool since she was about 6 months old!!) and instead picked out a totally different cup! She is upset because it "stinks" (which really means it doesn't stink like nasty milk!), but she is so far still using it, we will see what happens at bedtime! She has always preferred latex over silicone, and so this is the first time she is willingly using a silicone sippy cup! That to me is a huge step! Having Emma here this weekend we expected to see a lot more behaviors out of her. I think the big test will be this week and seeing how she does!

Day 1

Well, we have made a huge decision. We decided to try Grace out on some medication and see if it helps her out at all. When she was first diagnosed we were on the fence about her diagnosis. We both felt at 18 months it would be pretty hard to come up with a concrete diagnosis. We did know, however, that something was up. At 22 months we received the same diagnosis from a different evaluation. If you have read my blog then you know our story. One of the first decisions I made was to never go the route of medication. I agree with my husband it quickly becomes a slippery slope. I also know first hand the frustration of being forced to take medication (as a child I was "diagnosed" by a Dr with ADHD and as an adult was tested. When I was tested the Dr. laughed at the idea anyone could have ever said I had it!). I am a firm believer in teaching children to learn to handle their emotions. I have also seen my child regress significantly lately. How can I teach her to handle her anger, when I spend all of every meltdown she has protecting her little sister, and protecting her from herself! I believe we have come to the point where we need to seek more help than what we have been able to provide. After meeting with her behavioralist, whom I have great respect for and feel does an amazing job, he offered us the option of a medication we could try. It is called guanfacine. It is an old blood pressure medication, that is now used for ADHD and other issues. In Grace's case we are hoping it will decrease her aggression and also help to just calm her down a little bit. We are not thinking she has ADHD, she doesnt display the signs of that at all, but we do want her to be able to have a speed other than 110% ALL the time! In general medication for ADHD actually contains a stimulant. This is not an option for her as she has a heart condition that prevents her from taking any sort of a stimulant. I am nervous but prepared to try this option out and see where it takes us!

Today was the first day she took it. It is an incredibly small dose, I have a hard time believing it will even have any affect at all! On the other hand, part of me is very scared to do this because I worry it will change her. Today we did not notice any changes at all other than the fact that she was very thirsty (one common side effect of the drug is that it causes dry mouth). I would expect it to take a couple days before we notice any differences, but I am hoping to record any of her changes. This is a hard step for us to take, one I know a lot of parents struggle with! My goal is to post at least once a day and let you know how this process is going for us, in hopes you can share some feedback on it, or maybe you are in a similiar position, and we can help you out with what we are dealing with!

On a different note, we are waiting on test results from her cardiologist, and GI Dr. Her issues with that will in no way be affected by the drug (we had prior approval from both before taking it!), but it certainly adds another layer to what we are looking at! I look forward to sharing with you tomorrow!