I have been battling a migraine since Saturday - pretty non-stop since Tuesday. Yesterday I got massage and hoped it would help but it did not. Today I was able to get a chiropractor appointment scheduled, after my girls' Bible Study, for myself and Jonathan (to help with his Rumination Syndrome). I didn't wear any makeup or do my hair today, and dressed in very "comfy" clothes for the adjustment. Normally I am not self-conscious of my sloppy appearance when not at work and simply try to not run into anyone but today it seemed like I just kept running into people everywhere!
At the chiropractor appointment there where a bunch of people in the waiting room:( JJ did great though and sat in the room while I got traction (my herniated disk has also been acting up lately so needed that extra treatment) calmly and quietly. Then we got our adjustments. During that time JJ insisted that he was hungry and needed food. When he actually wants to eat we feed him so...off to Subway we went despite my not wanting to be seen by anyone else while dressed "comfortably."
Getting ready to turn left in Subway there were a bunch of cars coming and a semi parked on the right shoulder so no one could get around me. We almost (by inches) got rear-ended by a teenager driving a small truck. Grrrr. I was able to move forward enough to avoid the impact but we sure did hear a lot of screeching rubber.
We got into Subway and it was empty but someone called my name as if they knew me. It was fun that the "sandwich artist" was a friend of ours...but it reminded me that her graduation card is still sitting on my desk unmailed...fail...
We were getting JJ's sandwich made and since the store was empty I was working with him to use his own words to get what he wanted and helping him retrieve the right words for toppings. He put things on his sandwich I have never seen him do before when I just do it so it was a good teaching moment for me too:)
He asked for chips and I agreed but when I turned to tell him where to go to there were two deputies standing right in front of the rack that I had not heard come in. JJ seemed reluctant so I encouraged him that they would not hurt him and to just go get his chips. They smiled and engaged him. When he got back to me (I was trying to pay and finish up) I realized they were talking to him but he was not responding. I was impressed that he went to get the chips by himself (cheetoes are very enticing;) So I took the time to turn him around, get down on his level, and encourage him to talk back to the officers. They engaged him kindly and he gave some responses (that I said first so he could just repeat). One asked if he wanted some tattoos (that we normally do not allow) but it was a way to get him to talk more with him so I modeled for him to say "yes please." We had to go to the truck to get them and the other officer said, "have him turn on the lights too!" JJ got to crawl up into the truck and put the buttons to make the lights go, then the sirens. He seemed to have a good time but he is just so utterly subdued around people. We see such an animated and talkative kid when he feels safe (and last night's babysitter said he was totally different this time meaning she finally made it to his "safe" list too! yay!) Anyway, the deputy kept trying to engage him and I kept trying to think of things for JJ to say to the man. He got his 2 tattoos and a sticker and we headed home (thankfully without further incident).
JJ had wanted his sticker on right away so I put that on in the car (right before he proceeded to eat his entire 6" sub. He WAS hungry!)
When we got home my husband had a picture framing customer here. When he saw JJ (and his sticker) his first words were, "Uh oh! Mom must of gotten pulled over!"
Whaaaaaa? Thanks a lot Babe lol! So ended our quick trip for adjustments. Whew! But, hey, my migraine is gone for the first time in almost a week! The test will be if it comes back sitting through Faith's double header softball game in 90 degree heat tonight;)
Friday, June 24, 2016
Saturday, June 11, 2016
A Fun Family Supper
Tonight's supper is a testimony to how relaxed things have gotten in our family lately - they all ganged up on me lol! It was so fun to laugh around the table and not have fighting. It was what I imagine that other families get to enjoy most of their meal times.
We had a bit of serious discussion at lunch when my husband and I praised the girls for their very noticeable changes in behavior lately and how pleasant that has been. We spent time as a family trying to dissect why things have been less tense and more relaxed lately - and why the girls have been more behaved so that we can keep it happening lol! I don't know if that is what made everyone more relaxed for supper or not but we had a lot of laughs.
First, Grace asked me to help her understand what I do for work. I tried to explain that I help people make decisions. Superman responded, "it sounds like you boss people around." They thought that was very funny since that is what they see me do at home;) Superman is the peacemaker in our family and will always joke and clown around to get a laugh.
Then I tried to explain more about what I do like helping people not feel sad or anxious, or to help them get along, or to help parents and kids by helping the parents with ideas on how to discipline their kids so their kids can grow up making better choices. Superman again piped up with, "I bet you tell them how to rule with an iron fist!" We are a sarcastic humor family and it was actually such balm to my heart to have Superman speak his mind to joke with me like that and know I would laugh. He was being funny, not trying to be mean.
Then I got a song line stuck in my head and sang it with a little dance as I was putting away the food. Buddy told me to stop dancing as he was laughing hysterically at me. My husband stopped him and said, "hey! no! You don't want Mom to stop singing and dancing! When you see her dancing she is in a good mood! That is the time to say, "Hey Dad and I are heading up to Canada to go fishing!'" lol!
We then tackled Buddy to the ground and put a "man bun" in his hair. AND took pictures lol! He was good natured about it- so much so that I actually got a picture of him...are you ready??? SMILING!!!!. Beautiful was over for supper and we had fun with it:)
It is so rare that we have this kind of fun time that I actually had to post about it. Tensions are easing a little here. It is a good reminder to me that things can be different and to hold onto these light moments and try to make them more frequent:)
Laughter is good medicine:)
Thursday, June 9, 2016
Update on JJ
I am not sure I am in the best frame of mind to be writing this post but I have a little time so here goes.
JJ met with the GI Specialist and he said that JJ was just fine. We met for a Feeding Study and the OT and Speech Pathologist said that as far as eating goes, JJ is just fine. They noted some sensory and OT issues. We met with the Neurologist. He was a very old man (I am guessing close to 80) and we very much appreciated his decades of experience and wisdom. He said that we could do an MRI but wondered what the point would be as it would not alter the treatment plan. We appreciated that he did not send JJ off for more testing where he would have to be put under anesthesia without a solid good reason. We felt like he heard us. He asked good questions. He was good with JJ. He said that JJ did have Apraxia - but that the diagnosis doesn't really give us any real information that would drive treatment - other than to continue Speech Therapy as that seems to be helping him. He actually had some things to say that were difficult to hear regarding prognosis. He diagnosed him with Rumination Syndrome, which I had never heard of, and we have been given the name of 2 Psychologists who specialize with that disorder.
After doing some research on Rumination Syndrome, we are using the techniques that we have learned and JJ is not vomiting into his mouth as much as he was. We can pursue the specialists if we can't get it under control ourselves now that we know what it is.
Neurologically I am very sad with the conclusions the specialist drew, and quite frankly am angry. I know JJ doesn't present that he talks much or engages, but once he feels safe he talks non-stop, is actually understandable most of the time now, and has so much personality and character that he is a joy to have around. One of the comments the neurologist said was that we may have to medicate him for his behavior within 5 years if he continues with the emotional dysregulation. After having the Middles gone at camp for a week and JJ having only 1 outburst it is clear that there is more to it than him just being out of control. Life in this house is enough to make ME emotionally dysregulated a good chunk of time lol!
Then we just got word 2 days ago that the company where JJ does his Speech Therapy is going to stop doing outpatient work. My husband and I had been considering for awhile having him stop as what they are doing with him are tasks that we could be doing ourselves. So while we were upset we have come to realize that if we just do what they were doing, and be intentional about it daily, then we can probably make better progress. We got lazy and left it to the Speech Path and she never gave us take home work, so we will just do it at home and later have him reassessed and see what he needs to work on next. JJ has made HUGE strides in the 18 months he has been in speech therapy. Most of them related to him feeling confident enough to express his needs if he has to, and feeling more comfortable with strangers. The articulation issues are what they are working on now, and word retrieval, but we can be doing that at home after watching how they have done it for the past 12 months since JJ actually got comfortable enough to talk during speech therapy;)
JJ has also been making big strides in making friends and being social. He stayed with a sitter last Thursday by himself and did great! He chose the sitter, the activities, and asked if they could stay at our house where he felt safe - but he did it! He also attended 3 days of VBS even though it required him to wake 2-3 hours earlier than usual (we did let him keep sleeping on Wed. I got him up and dressed but he was a limp noodle and just kept sleeping so we let him). Getting up early has not resulted in him going to sleep any earlier than 11:30 (partly due to late baseball and softball games - but partly because he just can't fall asleep any earlier than that. The Neurologist told us to not even try). He is readily and appropriately playing with other kids at the pool and other social situations. He isn't talking much with them in a group and still looks to me to answer for him. When people talk to him he mostly grunts and just stares at them. I try to understand what that looks like to others because in situations where he feels safe he never shuts up and is extremely animated... But last week he had his first individual play date (without his older siblings around to "interpret" for him) and he did just fine. The boys played together very well with no difficulty with being understood and I was intentionally not jumping in to clarify what he was saying.
I guess my Momma's heart is hurting to get discouraging news, but it is also bringing out the Momma Bear in me. JJ is precious. He is perfect just the way he is. He is adorable. He is hilarious. He is smart. He has so much personality and can "read the room." He is tenacious. He is kind, gentle, sweet, and so loving. He is thoughtful. He never forgets any idea (struggles with word retrieval, but he will never forget a rule or concept - and insists that it be consist every time! I can get away with NOTHING lol!). He asks so many questions and wants to know how everything works. Sure he won't stop asking until he gets satisfactory answers no matter how inconvenient the timing. Sure he talks in sentences that are often times with messed up word sequences so it is like talking to Yoda. But he is JJ. He is unique and I love him to death. I refuse to believe the prognosis that was painted for him. He is a survivor and has parents and a family who will do whatever it takes for him to succeed. He was created by God who has a perfect plan for him just the way he is, not in spite of the way he is.
So...it will be well and I am going to focus on my son JJ, not what he looks like on paper and defined as some category, but as a created child who is full of possibilities:)
Yes, it is not lost on me that I was initially afraid that no one would believe us and they would say he was "just fine" but then he was given descriptions/prognoses that have made me say, "No! Darn it! He will be just fine!" Sheesh, I need to make up my mind;)
JJ met with the GI Specialist and he said that JJ was just fine. We met for a Feeding Study and the OT and Speech Pathologist said that as far as eating goes, JJ is just fine. They noted some sensory and OT issues. We met with the Neurologist. He was a very old man (I am guessing close to 80) and we very much appreciated his decades of experience and wisdom. He said that we could do an MRI but wondered what the point would be as it would not alter the treatment plan. We appreciated that he did not send JJ off for more testing where he would have to be put under anesthesia without a solid good reason. We felt like he heard us. He asked good questions. He was good with JJ. He said that JJ did have Apraxia - but that the diagnosis doesn't really give us any real information that would drive treatment - other than to continue Speech Therapy as that seems to be helping him. He actually had some things to say that were difficult to hear regarding prognosis. He diagnosed him with Rumination Syndrome, which I had never heard of, and we have been given the name of 2 Psychologists who specialize with that disorder.
After doing some research on Rumination Syndrome, we are using the techniques that we have learned and JJ is not vomiting into his mouth as much as he was. We can pursue the specialists if we can't get it under control ourselves now that we know what it is.
Neurologically I am very sad with the conclusions the specialist drew, and quite frankly am angry. I know JJ doesn't present that he talks much or engages, but once he feels safe he talks non-stop, is actually understandable most of the time now, and has so much personality and character that he is a joy to have around. One of the comments the neurologist said was that we may have to medicate him for his behavior within 5 years if he continues with the emotional dysregulation. After having the Middles gone at camp for a week and JJ having only 1 outburst it is clear that there is more to it than him just being out of control. Life in this house is enough to make ME emotionally dysregulated a good chunk of time lol!
Then we just got word 2 days ago that the company where JJ does his Speech Therapy is going to stop doing outpatient work. My husband and I had been considering for awhile having him stop as what they are doing with him are tasks that we could be doing ourselves. So while we were upset we have come to realize that if we just do what they were doing, and be intentional about it daily, then we can probably make better progress. We got lazy and left it to the Speech Path and she never gave us take home work, so we will just do it at home and later have him reassessed and see what he needs to work on next. JJ has made HUGE strides in the 18 months he has been in speech therapy. Most of them related to him feeling confident enough to express his needs if he has to, and feeling more comfortable with strangers. The articulation issues are what they are working on now, and word retrieval, but we can be doing that at home after watching how they have done it for the past 12 months since JJ actually got comfortable enough to talk during speech therapy;)
JJ has also been making big strides in making friends and being social. He stayed with a sitter last Thursday by himself and did great! He chose the sitter, the activities, and asked if they could stay at our house where he felt safe - but he did it! He also attended 3 days of VBS even though it required him to wake 2-3 hours earlier than usual (we did let him keep sleeping on Wed. I got him up and dressed but he was a limp noodle and just kept sleeping so we let him). Getting up early has not resulted in him going to sleep any earlier than 11:30 (partly due to late baseball and softball games - but partly because he just can't fall asleep any earlier than that. The Neurologist told us to not even try). He is readily and appropriately playing with other kids at the pool and other social situations. He isn't talking much with them in a group and still looks to me to answer for him. When people talk to him he mostly grunts and just stares at them. I try to understand what that looks like to others because in situations where he feels safe he never shuts up and is extremely animated... But last week he had his first individual play date (without his older siblings around to "interpret" for him) and he did just fine. The boys played together very well with no difficulty with being understood and I was intentionally not jumping in to clarify what he was saying.
I guess my Momma's heart is hurting to get discouraging news, but it is also bringing out the Momma Bear in me. JJ is precious. He is perfect just the way he is. He is adorable. He is hilarious. He is smart. He has so much personality and can "read the room." He is tenacious. He is kind, gentle, sweet, and so loving. He is thoughtful. He never forgets any idea (struggles with word retrieval, but he will never forget a rule or concept - and insists that it be consist every time! I can get away with NOTHING lol!). He asks so many questions and wants to know how everything works. Sure he won't stop asking until he gets satisfactory answers no matter how inconvenient the timing. Sure he talks in sentences that are often times with messed up word sequences so it is like talking to Yoda. But he is JJ. He is unique and I love him to death. I refuse to believe the prognosis that was painted for him. He is a survivor and has parents and a family who will do whatever it takes for him to succeed. He was created by God who has a perfect plan for him just the way he is, not in spite of the way he is.
So...it will be well and I am going to focus on my son JJ, not what he looks like on paper and defined as some category, but as a created child who is full of possibilities:)
Yes, it is not lost on me that I was initially afraid that no one would believe us and they would say he was "just fine" but then he was given descriptions/prognoses that have made me say, "No! Darn it! He will be just fine!" Sheesh, I need to make up my mind;)
Saturday, May 21, 2016
Estes Park Vacation - May 2016
Our family has tried, over the past several years, to embark on a family vacation annually. I only had 1 family vacation as a kid and my husband had none, so we wanted to make these memories with our kids. We used to go visit family a couple of times a year, but have been enjoying finding new places to visit. Before the Middles came we went with family to Mazatlan 3 times, soon after they came we had already planned the trip so a friend kept the Middles for 10 days while we went and got a much needed break (the kids were 2, 2 and 3) while our friend earned several crowns in heaven for her sacrifice;) and went 1 more time in 2012 with Superman and JJ while the girls stayed home with friends. I still think that staying on the beach with no way for any electronic communication with me (except checking email once a day) is my favorite vacation...but these other ones have been fun too;) We have been to the Black Hills, Branson, Disney World, and this time chose Estes Park, CO. Beautiful and her husband honeymooned there last year and since this vacation was in part a celebration of our son-in-law graduating from college and about to start his new job they wanted to go back to Estes and we thought it was a good idea. We had to time it the week between him graduating and starting his new job so we expected some cooler temps, but it all worked out well:)
Day 1: We drove to CO. Drives are always difficult. Packing 9 of us into a 12 passenger van even with the grate on the back for extra storage is always more difficult. But we did it and the drive there was less traumatic than usual:) I suffered with a terrible headache the first couple of days but my husband gave me some neck rubs and by day 3 I was better. Made for a not as fun as it could have been drive, but it was fine. We got to the 6 bedroom house and unpacked - extremely thankful that we could all spread out. Grace had her own room so she could have a place to calm down. Thankfully her behavior over the whole of the trip was at the max a 6 on a 10 point scale when usually she has several massive tantrums. So, it was good she had a place to calm and be away from us when she started to escalate. We also did not have 12- 14 hour days of being out of the house. I think that the extra time in the house just relaxing helped her a lot. I sure helped me lol!
Anyway, after we got unpacked we enjoyed some of the food that I had packed (we only ate out 1 meal). My husband and the older kids had gone out to buy milk, etc and brought back some Sunkist which JJ enjoyed 2 glasses of immensely. JJ had picked a room right next to ours that he wanted to sleep in. It was the first vacation since we have had children where my husband and I had a room to ourselves! Anyway, come bedtime JJ was not settling down. He finally fell asleep after 1:30 and I fell asleep in his bed with him before him so at 2:30 I woke up and made my way to my room. A couple of hours later he crawled into bed with us. The 3 of us did not fit in a queen bed so I left him with my husband and I slept very well in his bed thank you very much lol!
Day 2: We were talking over breakfast about JJ not sleeping the night before so Buddy pulled out the Sunkist bottle and read that there are 41 mg of caffeine per 12 oz of Sunkist!!!!!!! We usually don't drink pop but are still drinking left over cases of pop from the wedding - the cheap orange shurfine stuff has no caffeine so I did not expect that! NO MORE caffeine for JJ lol!
We went to Bear Lake to hike. It was cold and snowing on and off. The trail around the lake was packed with snow. Everyone else thought that I would, as the resident "fun sucker" as my family somewhat affectionately calls me, have us just go back. But I surprised them with leading the way to hike around the lake over sometimes several feet of packed snow. It was pretty, not as cold as one would expect given all of that snow, but definitely wet.
After hiking we went back to the house where I settled in relaxing with 5 kids (and hot chocolate and s'mores) and my husband, Beautiful, and her husband all went fishing:)
Day 3: Grace's 10th Birthday! Today we hiked around Estes Lake. I had seen a map and saw there was a walking trail all the way around it, but did not note that it was 3.7 miles. It was a pretty hike but a little cold in spots depending on the wind. We saw an Eagle and a lot of Elk. JJ made it a bit over 1/2 way on his own but needed to be carried the rest of the way. When we got back to the house we got out Grace's birthday cupcakes to celebrate. Our awesome friends also made a last minute decision to vacation in Estes and it happened to be the week we were there, so they came over for supper to help us celebrate! It was extra special.
Here JJ, my husband, and I bring up the rear of our group:)
Day 4: It was warmer today so we did some more hiking. We went to a lake that was flat and small. There was not any snow on the path:) The kids decided to play "statue" so we got some fun pictures of them. I have realized that I do a lot of group shots of the kids so tried, on this vacation, to do more singles for their scrapbooks (of which I am years behind).
Then we went over to Bierstadt Lake trail. We knew we would never make it all the way to the lake, but we wanted to hike a mountain so this was it lol! Everyone started up the mountain but JJ decided he needed to be carried. After some stern negotiation I finally got him moving. It was so beautiful going up the mountain. It started with tall trees, then we got above the trees and could look out at the valley and mountains. Breathtaking beauty:) I was able to coax JJ from one "big rock" to another where he would stop and rest. Then he realized that everyone else had turned around to come back so, the incredibly stubborn child that he is, he decided that he wanted to keep moving upwards. When we got to higher than the others had even gone before they turned around I finally told him that we could not go any further than "that tree" because "we didn't pay the money." Shockingly he turned around to go back. I took a picture of the 3 kids who were still with me as JJ booked it down the mountain with our son in law trying to keep up with him. It was hilarious lol! My husband and Buddy were already at the bottom. It was a narrow and rocky trail that wove back and forth to get up the mountain as going straight up would have been impossible. JJ was in his element though - silly kid. Later that night (after my husband, Beautiful, and her husband went fishing...again) he got this look on his face like he was imparting extremely important information ( his face is very animated when he is with people he feels safe with - it is adorable. However, he will NEVER let us capture it in a picture:( Again, very stubborn child) and said, "I am not afraid of heights anymore! I climbed a mountain!" It was extra precious that he said that because he is afraid of even being held upside down even at a slight slant. He also has always been terrified of being above the head of the person holding him. You know how little kids like being held up high or even tossed up gently? NEVER JJ. He will become absolutely hysterical. So, for him to say that was cute and sweet. Now, he still got scared later when I was trying to hand him out of the van over the top of me and his head got below his feet...but it is what it is:)
We went back home and...the oldest 3 went out fishing again:) They enjoyed eating their fish every night. Our son in law even made stuffed peppers on the grill with the fish one night. Beautiful came to me with some chips and left over "stuffing" encouraging me to try it. After my mouth stopped being on fire I asked what in the world was in it. She barely stopped laughing long enough to tell me "2 jalapenos." Troublesome child;)
Day 5: This was our last day there. In the morning my husband, Buddy, Beautiful and her husband all went on a 4 hour UTV drive. They had a great time and had some interesting stories of the terrain and closeness to steep drop offs. When they got back Buddy watched the Middles while the rest of us went downtown to do some shopping. I hate shopping...but we did find a toy store and bought JJ a bug catcher and us adults a trivia game that we later had tons and tons of laughs over. The carmel apples and homemade ice cream that we bought were also delicious (although JJ being JJ ordered a plain cone with vanilla that I had to finish for him - absolutely no culinary adventure in that boy - he is a lot like Buddy that way lol!)
After that we decided that our legs were all plenty sore from the preciously 3 days of hiking so we mostly drove around and enjoyed the scenery from the van. We drove a different road and it was just so beautiful!
Day 6: We packed up and drove home this day. The drive home was ok. No one fell asleep which was a testament to how much downtime we were able to have on the vacation to rest and relax, and not just run, run, run like every previous vacation. My husband is not one to sit still during a vacation so I am thankful for our son in law who is willing to go, go, go while I stay home with the other kids. I read a lot of books, the kids got to have a lot of Disney Junior watching and Kindle games (eh, we were on vacation, I allowed it for once;) I even slept well enough at night (after the first night) that I didn't even need a nap while we were there lol! We somehow managed to have more stuff to bring home even after eating most of the food we packed. We can't quite figure that out as we didn't buy that much there. I keep telling my husband that we need a 15 passenger van before the next trip...although maybe Beautiful and her husband won't want to take another vacation with us and then we will have enough room;)
Some random musings: I love the sound of water. I contemplated whether I prefer the sound of a mountain stream or ocean waves. Buddy and I decided that they are both nice for different reasons. I think the ocean waves are a little better...but then I realized that is probably because I was far more relaxed by the ocean only having 2 kids for 4 of the trips and the 5th trip was without the girls so it was easier (except that JJ was only 18 months old and was...JJ). Beautiful and Buddy just never caused any trouble on vacations and usually my husband went off with my step-dad to explore while the rest of us just sat on the beach and the biggest decision of the day was to walk to the left or the right along the shore;) It is just not the same with the other kids which makes me long for the days where life was easier...while I remind myself that easier isn't better.
Which led me to my last bout of musing...at what age is it easier to have kids on vacation? I mean, we look back on vacations and tend to forget the stress of it and remember the happy moments caught on camera (I will NOT show you the many MANY attempted "happy" family pictures that were taken on this trip before we got 1 that worked lol!). I wonder if it will ever be relaxing to have our kids on vacation. Someday my husband and I will vacation alone, it will be relaxing, but we will be lonely. I don't know what is better lol! Scratch that, when my husband I go on vacation he will be running around "doing" and I will be begging to stay back at the cabin "being." There will still be stress lol!!
Saturday, April 16, 2016
A Fun Day:)
I usually post about heavier things, so I thought I would share a post about how our family does, at times, actually have some fun;)
This has been a very busy work week for me - working every day when I normally have Thursday and Friday off (although my husband often reminds me that I do go in for an hour or 2 on those days and rarely do I actually have them off). This week was a lot more than that and we (especially my husband) needed some down time.
Today I got to present a 2 hour training on Trust Based Relational Intervention (TBRI). I love "teaching" and I am so passionate about that material (just as passionate as I am about EMDR!). I was so excited that they asked me to come and talk about it:)
While I was doing that my husband took Superman, Faith, and JJ fishing in the town where I was presenting. I reminded my husband it was not a "hard-core" fishing day...just enough for the kids to make some memories. My husband's idea of fishing is waking up when it is still pitch black and leaving for the water (which is harder to find in this state than in MN where we grew up;) and not returning until dark lol! Today was low key:)
Anyway, they picked me up when I was done and we went to Applebees for lunch. We used a gift card that I had gotten for a presentation I done on the same material a year ago (we clearly do not go out to eat very often lol!). It was a good meal. Some highlights of the meal included JJ asking for both grilled chicken and a corn dog. While he was considering those he saw a picture of a steak. So...he got the kids' steak. He ended up eating 1/2 of that and most of Faith's shrimp. Then he thought the lemons on my plate were oranges...his face was hilarious when he figured out that was not the case lol! He then insisted that we buy him shrimp and oranges to take home for him to eat. Superman really likes to eat burgers so we got him a quesadilla burger. He was shocked at the size of it and said it was the first time he has eaten out at a restaurant and actually got completely full:) Faith loved the mozzarella sticks (a girl after my own heart) and her chicken and shrimp meal. Jonathan loudly announcing his need to...use the restroom...left us all laughing as well.
Grace was not with us because...she is in the Team Mates program and got to attend the Spring Game today! She was so excited to go and had a great time. We are so thankful for that program for her to get the extra connection time with her Teammate who is, by the way, the most perfect fit for Grace:) Grace is now insisting that the rest of us need to actually attend a game too (although my husband and Buddy have attended a Spring Game too) so I suppose we will actually have to experience a game at some point (after living in this state for 18 years now;).
We came home and the kids spent the afternoon and evening playing outside. JJ INSISTED that I jump on the trampoline with him. He seems to think I am some 20-something mother. I was sitting on the trampoline catching my breath from laughing so hard at his silliness (ok...and from jumping so long) when he looked down on my head seeing my "roots" growing out and said, "Mom, why is your hair turning white?" I answered, "because I am getting old." He was so sweet when he replied, "Mom! You are not old!" So we jumped, I played catch with the 3 of them while Grace enjoyed her calming lavender bath, and JJ had a ton of fun running through the neighbor's sprinkler while fully clothed;)
Beautiful and her husband were heading back to our place tonight but she REALLY wanted to see the Jungle Book movie so asked if we would come too. Buddy was at work all day and I thought it was too much for the kids...so my husband drove down to eat supper and see the movie with them. It is just so incredibly sweet to me that my husband does those fun things with her (and that SHE wants us to be such a constant part of their life even post-marriage), and the other kids. So many dads do not. I am infinitely thankful for my husband - and God's wisdom when He put us together. Looking back 24 years ago we were a terrible match - but God has worked in both of us and made us compliment each other well. He knew what He was doing;)
So, just a fun post about a fun day to let you know (and remind me) that we are able to have fun times as a family and it isn't ALL drama (just 80% of it;).
This has been a very busy work week for me - working every day when I normally have Thursday and Friday off (although my husband often reminds me that I do go in for an hour or 2 on those days and rarely do I actually have them off). This week was a lot more than that and we (especially my husband) needed some down time.
Today I got to present a 2 hour training on Trust Based Relational Intervention (TBRI). I love "teaching" and I am so passionate about that material (just as passionate as I am about EMDR!). I was so excited that they asked me to come and talk about it:)
While I was doing that my husband took Superman, Faith, and JJ fishing in the town where I was presenting. I reminded my husband it was not a "hard-core" fishing day...just enough for the kids to make some memories. My husband's idea of fishing is waking up when it is still pitch black and leaving for the water (which is harder to find in this state than in MN where we grew up;) and not returning until dark lol! Today was low key:)
Anyway, they picked me up when I was done and we went to Applebees for lunch. We used a gift card that I had gotten for a presentation I done on the same material a year ago (we clearly do not go out to eat very often lol!). It was a good meal. Some highlights of the meal included JJ asking for both grilled chicken and a corn dog. While he was considering those he saw a picture of a steak. So...he got the kids' steak. He ended up eating 1/2 of that and most of Faith's shrimp. Then he thought the lemons on my plate were oranges...his face was hilarious when he figured out that was not the case lol! He then insisted that we buy him shrimp and oranges to take home for him to eat. Superman really likes to eat burgers so we got him a quesadilla burger. He was shocked at the size of it and said it was the first time he has eaten out at a restaurant and actually got completely full:) Faith loved the mozzarella sticks (a girl after my own heart) and her chicken and shrimp meal. Jonathan loudly announcing his need to...use the restroom...left us all laughing as well.
Grace was not with us because...she is in the Team Mates program and got to attend the Spring Game today! She was so excited to go and had a great time. We are so thankful for that program for her to get the extra connection time with her Teammate who is, by the way, the most perfect fit for Grace:) Grace is now insisting that the rest of us need to actually attend a game too (although my husband and Buddy have attended a Spring Game too) so I suppose we will actually have to experience a game at some point (after living in this state for 18 years now;).
We came home and the kids spent the afternoon and evening playing outside. JJ INSISTED that I jump on the trampoline with him. He seems to think I am some 20-something mother. I was sitting on the trampoline catching my breath from laughing so hard at his silliness (ok...and from jumping so long) when he looked down on my head seeing my "roots" growing out and said, "Mom, why is your hair turning white?" I answered, "because I am getting old." He was so sweet when he replied, "Mom! You are not old!" So we jumped, I played catch with the 3 of them while Grace enjoyed her calming lavender bath, and JJ had a ton of fun running through the neighbor's sprinkler while fully clothed;)
Beautiful and her husband were heading back to our place tonight but she REALLY wanted to see the Jungle Book movie so asked if we would come too. Buddy was at work all day and I thought it was too much for the kids...so my husband drove down to eat supper and see the movie with them. It is just so incredibly sweet to me that my husband does those fun things with her (and that SHE wants us to be such a constant part of their life even post-marriage), and the other kids. So many dads do not. I am infinitely thankful for my husband - and God's wisdom when He put us together. Looking back 24 years ago we were a terrible match - but God has worked in both of us and made us compliment each other well. He knew what He was doing;)
So, just a fun post about a fun day to let you know (and remind me) that we are able to have fun times as a family and it isn't ALL drama (just 80% of it;).
Wednesday, April 6, 2016
JJ's Scope Procedure
Thank you all for praying for today! It went well:)
We got up up 4:15 a.m. to be on the road by 5. I accidentally knocked the diffuser over where JJ was sleeping and got him wet...which woke him up (he has seasonal allergies so he has been having a bad runny nose and we were using EO's to help him). Instead of falling back asleep like he normally would, he knew what we were going to do today and got up. At 4:30 in the morning. There is a first for everything! Then he begged for food! JJ! Before 2 p.m.! I laughed hysterically for a few minutes while my husband was trying to figure out if I had lost my mind (which I probably have) then we just moved forward.
The whole trip to the hospital from 5 - 6:30 JJ stayed wide awake but was very quiet other than commenting about the stars:)
We got there 15 minutes early and registered. The next person who was supposed to be there already for the 7:30 procedure did not show up on time so they just prepped JJ and got him done at 7:30. I held up ok. JJ was clearly very nervous and retreating inside himself. When the charge nurse (who was AMAZING) asked him for his name before she could administer the liquid valium he couldn't even say his name - I am not sure he even remembered his last name at that point. The staff were all wonderful but we had 45 minutes less than we thought for prep so it all moved pretty quick (praise the Lord!). The anesthesiologist, GI specialist, Nurse Practitioner, nurses, and Life Specialist (there to help JJ feel calm, and prepare him with pictures of what was going to happen) were all very kind, low key, thoughtful, and anticipated our anxiety and tried to help us with that.
They took JJ at 7:30 and he did not get outwardly upset at all. The nurse got us some drinks and a muffin and then the GI specialist was right back. It was 8 and the fastest 30 minutes of my life. I know that was because of your prayers! Thank you for praying and for those of you who texted this morning to show us you were thinking of us. It meant A LOT!
The GI specialist gave us some of the pictures of JJ's insides and it was all structurally normal and there was no visible evidence of long term damage from his frequent vomiting. Yea!! He will call in a week with the results of the biopsies (like if he has Celiacs, infections, long-term damage, etc). If the biopsies come back clear, and the neurologist says it is not related to any neurological problem, and the feeding specialists say it is not motor related...then we are looking at this being a behavioral issue like anxiety. I know the depth of JJ's anxiety with all of the separation issues but if his anxiety makes his vomit every time he eats? When I was a teenager I spent several years vomiting 3 - 5 times a day entirely due to being in specific situations that made me extremely anxious (pretty much being rejected by people I wanted to like me). It would slay me to think that JJ feels that much anxiety - those were horrible years for me. But...I am counting chickens before they are hatched...we will get the results from the next diagnostic phases first before we check out that "basket."
Anyway, then a younger child was brought to the room next door and was clearly unhappy and inconsolable. As JJ was still in recovery I just paced and paced the floor thinking he may be that unhappy back in recovery and I wasn't there for him. But, the anesthesiologist stepped in and said he was fine. Would he tell me if he wasn't? probably not lol! But I was able to sit for awhile then. That was the longest 30 minutes of my life (aside from being in labor;)
They brought him back and he was still sleeping. He opened his unfocused eyes a bit to crawl into the regular bed and snuggle with me. They did all of the vitals, etc. They wanted him to wake to drink but we told them that getting him to eat/drink in the morning on a good day was sketchy so they let us go after about an hour. He woke long enough while we were taking out the IV and dressing him to tell us he wanted pizza and wanted the wheelchair to take him to the car rather than me carry him. Then he promptly fell asleep in the car again. We are home, we ordered pizza and it is waiting for him, but he is still sleeping and likely will sleep a long time yet I am sure (and I am going to go nap right with him:)
Thanks so much for your support and your prayers:) We are at the beginning of this diagnostic process and really appreciate your prayers for peace and for answers:)
We got up up 4:15 a.m. to be on the road by 5. I accidentally knocked the diffuser over where JJ was sleeping and got him wet...which woke him up (he has seasonal allergies so he has been having a bad runny nose and we were using EO's to help him). Instead of falling back asleep like he normally would, he knew what we were going to do today and got up. At 4:30 in the morning. There is a first for everything! Then he begged for food! JJ! Before 2 p.m.! I laughed hysterically for a few minutes while my husband was trying to figure out if I had lost my mind (which I probably have) then we just moved forward.
The whole trip to the hospital from 5 - 6:30 JJ stayed wide awake but was very quiet other than commenting about the stars:)
We got there 15 minutes early and registered. The next person who was supposed to be there already for the 7:30 procedure did not show up on time so they just prepped JJ and got him done at 7:30. I held up ok. JJ was clearly very nervous and retreating inside himself. When the charge nurse (who was AMAZING) asked him for his name before she could administer the liquid valium he couldn't even say his name - I am not sure he even remembered his last name at that point. The staff were all wonderful but we had 45 minutes less than we thought for prep so it all moved pretty quick (praise the Lord!). The anesthesiologist, GI specialist, Nurse Practitioner, nurses, and Life Specialist (there to help JJ feel calm, and prepare him with pictures of what was going to happen) were all very kind, low key, thoughtful, and anticipated our anxiety and tried to help us with that.
They took JJ at 7:30 and he did not get outwardly upset at all. The nurse got us some drinks and a muffin and then the GI specialist was right back. It was 8 and the fastest 30 minutes of my life. I know that was because of your prayers! Thank you for praying and for those of you who texted this morning to show us you were thinking of us. It meant A LOT!
The GI specialist gave us some of the pictures of JJ's insides and it was all structurally normal and there was no visible evidence of long term damage from his frequent vomiting. Yea!! He will call in a week with the results of the biopsies (like if he has Celiacs, infections, long-term damage, etc). If the biopsies come back clear, and the neurologist says it is not related to any neurological problem, and the feeding specialists say it is not motor related...then we are looking at this being a behavioral issue like anxiety. I know the depth of JJ's anxiety with all of the separation issues but if his anxiety makes his vomit every time he eats? When I was a teenager I spent several years vomiting 3 - 5 times a day entirely due to being in specific situations that made me extremely anxious (pretty much being rejected by people I wanted to like me). It would slay me to think that JJ feels that much anxiety - those were horrible years for me. But...I am counting chickens before they are hatched...we will get the results from the next diagnostic phases first before we check out that "basket."
Anyway, then a younger child was brought to the room next door and was clearly unhappy and inconsolable. As JJ was still in recovery I just paced and paced the floor thinking he may be that unhappy back in recovery and I wasn't there for him. But, the anesthesiologist stepped in and said he was fine. Would he tell me if he wasn't? probably not lol! But I was able to sit for awhile then. That was the longest 30 minutes of my life (aside from being in labor;)
They brought him back and he was still sleeping. He opened his unfocused eyes a bit to crawl into the regular bed and snuggle with me. They did all of the vitals, etc. They wanted him to wake to drink but we told them that getting him to eat/drink in the morning on a good day was sketchy so they let us go after about an hour. He woke long enough while we were taking out the IV and dressing him to tell us he wanted pizza and wanted the wheelchair to take him to the car rather than me carry him. Then he promptly fell asleep in the car again. We are home, we ordered pizza and it is waiting for him, but he is still sleeping and likely will sleep a long time yet I am sure (and I am going to go nap right with him:)
Thanks so much for your support and your prayers:) We are at the beginning of this diagnostic process and really appreciate your prayers for peace and for answers:)
Thursday, March 17, 2016
JJ's Pediatric GI Appointment
Today we had an appointment with a Pediatric GI specialist. JJ has struggled with reflux since birth off and on, but it has been worsening the past 18 months (since he is actually eating regularly!) We decided to take him in to a specialist and see what may be causing it and try to fix it. We are wondering if it is related to the apraxia. We are also wondering how much damage is being caused and how to fix the damage or stop damage from starting.
I had prayed for specific things:
That the specialist would take the time to hear what the issues really are: The specialist was wonderful. He took a lot of time to listen to me, and ask questions that clearly showed he was trying to assimilate the information and work toward an accurate diagnosis and the best help for JJ.
That he would make an accurate diagnosis: There is no doubt that JJ has reflux. The problem is what is causing it. So...we have to go back in 3 weeks and have an upper and lower scope done where pictures will be taken of JJ from his mouth on through - along with biopsies taken to see how much damage has been caused already from the reflux, if there is a structural problem, and if there is an infection/disease/inflammation problem. So many "possible causes" were thrown out that have me terrified that I am not letting myself even go there yet. I am trying to just think about it as a "rule out" procedure.
That he would suggest a plan relevant for Jonathan (not just a cookie cutter approach): The specialist sees 3 areas that need to be assessed/evaluated before a final diagnosis(or more) can be made.
1. The problems are related to the reflux (his specialty),
2. The apraxia (so we have to go see a pediatric neurologist in May for a more formal and comprehensive evaluation and diagnosis from him of the apraxia and what all of the "systems" are that are affected by the apraxia (as it is not just his speech), and
3. a formal "feeding study" where an OT, PT, and SLP watch him eat and see what the feeding issues are.
The specialist was concerned that I still have to feed JJ 90% of the time as he won't feed himself otherwise and then won't gain weight. We finally have JJ gaining weight but he is not eating "like a 5 year old should" both with quantity and feeding himself and not eating until the afternoons. He just opened up so many "possibilities" of what is wrong that I have not considered that my head is spinning. So...all of that is very overwhelming but I completely agree with the reasons he thinks all three areas need to be assessed.
That whatever the problem is it can be fixed and without pain for JJ: Today JJ had nothing invasive done and he was very happy. He knows that he has to have a scope next time though. They will let me hold him next time while the meds take effect to put him under for procedure. Then they will take him and I will see him again after he is woke up. I am already a wreck just considering it. Blech!
That JJ would be willing to answer any necessary questions, would not be scared, doesn't have any permanent damage already, and would be cooperative: JJ did great in the appointment and was very brave. After we got out he kept saying "I was so brave!" (although it took me awhile to figure out he was saying "brave" lol!) Of course, we won't know about any current damage until after the scope is done.
So, God did answer our prayers today. Thank you for those of you who have prayed:)
It was a very hard appointment for me and I could barely keep it together emotionally afterwards. I keep thinking that we should have done this a long time ago. It is just too much information for me to assimilate about processes that I just do not understand. I am overwhelmed with feeling out of control. I have fear that they will find something bigger is wrong or that what we have been doing has been wrong. I am beating myself up that I have attempted to "normalize" his issues rather than aggressively seek consultation before now. The specialist was very kind, but it was clear that JJ is not developmentally on track on so many levels and he thinks we should have been in before now. I am emotionally overwhelmed but, like everything else that happens here, I will eventually just assimilate it as the "new normal." It is appointments like this that make me feel utterly inadequate to have all of these special needs that we deal with. The learning curve is so steep to understand the new issues that arise and it stretches me way beyond my comfort zone and makes me fear so many unknowns. Then I beat myself up because it could be so much worse and I need to just be happy it isn't life threatening.
I have been reading about Joshua and trying to just trust in what I know that God told Joshua specifically, but imagine that He has the same message to all who He calls to something that stretches them:
Dt 31:7b Be strong and courageous
Dt. 31:8 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.
Josh 1:6a Be strong and courageous
Josh 1:7a Only be strong and courageous
Josh 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
On and on we are told it as a command. He answered our prayers today. He has the final outcome in hand as well but I have a feeling He my sanctification is in the process and not the outcome (I hate it when that happens!!). I just need a little time to regain my footing and new normal. JJ is still our sweet JJ no matter what these diagnoses are, no matter what the interventions are, no matter if he is developmentally on track or not. God has the control, I do not, and today God is probably sitting back laughing at me saying, "one day you will finally consistently get it that you are not the one in control woman! Trust me!"
I had prayed for specific things:
That the specialist would take the time to hear what the issues really are: The specialist was wonderful. He took a lot of time to listen to me, and ask questions that clearly showed he was trying to assimilate the information and work toward an accurate diagnosis and the best help for JJ.
That he would make an accurate diagnosis: There is no doubt that JJ has reflux. The problem is what is causing it. So...we have to go back in 3 weeks and have an upper and lower scope done where pictures will be taken of JJ from his mouth on through - along with biopsies taken to see how much damage has been caused already from the reflux, if there is a structural problem, and if there is an infection/disease/inflammation problem. So many "possible causes" were thrown out that have me terrified that I am not letting myself even go there yet. I am trying to just think about it as a "rule out" procedure.
That he would suggest a plan relevant for Jonathan (not just a cookie cutter approach): The specialist sees 3 areas that need to be assessed/evaluated before a final diagnosis(or more) can be made.
1. The problems are related to the reflux (his specialty),
2. The apraxia (so we have to go see a pediatric neurologist in May for a more formal and comprehensive evaluation and diagnosis from him of the apraxia and what all of the "systems" are that are affected by the apraxia (as it is not just his speech), and
3. a formal "feeding study" where an OT, PT, and SLP watch him eat and see what the feeding issues are.
The specialist was concerned that I still have to feed JJ 90% of the time as he won't feed himself otherwise and then won't gain weight. We finally have JJ gaining weight but he is not eating "like a 5 year old should" both with quantity and feeding himself and not eating until the afternoons. He just opened up so many "possibilities" of what is wrong that I have not considered that my head is spinning. So...all of that is very overwhelming but I completely agree with the reasons he thinks all three areas need to be assessed.
That whatever the problem is it can be fixed and without pain for JJ: Today JJ had nothing invasive done and he was very happy. He knows that he has to have a scope next time though. They will let me hold him next time while the meds take effect to put him under for procedure. Then they will take him and I will see him again after he is woke up. I am already a wreck just considering it. Blech!
That JJ would be willing to answer any necessary questions, would not be scared, doesn't have any permanent damage already, and would be cooperative: JJ did great in the appointment and was very brave. After we got out he kept saying "I was so brave!" (although it took me awhile to figure out he was saying "brave" lol!) Of course, we won't know about any current damage until after the scope is done.
So, God did answer our prayers today. Thank you for those of you who have prayed:)
It was a very hard appointment for me and I could barely keep it together emotionally afterwards. I keep thinking that we should have done this a long time ago. It is just too much information for me to assimilate about processes that I just do not understand. I am overwhelmed with feeling out of control. I have fear that they will find something bigger is wrong or that what we have been doing has been wrong. I am beating myself up that I have attempted to "normalize" his issues rather than aggressively seek consultation before now. The specialist was very kind, but it was clear that JJ is not developmentally on track on so many levels and he thinks we should have been in before now. I am emotionally overwhelmed but, like everything else that happens here, I will eventually just assimilate it as the "new normal." It is appointments like this that make me feel utterly inadequate to have all of these special needs that we deal with. The learning curve is so steep to understand the new issues that arise and it stretches me way beyond my comfort zone and makes me fear so many unknowns. Then I beat myself up because it could be so much worse and I need to just be happy it isn't life threatening.
I have been reading about Joshua and trying to just trust in what I know that God told Joshua specifically, but imagine that He has the same message to all who He calls to something that stretches them:
Dt 31:7b Be strong and courageous
Dt. 31:8 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.
Josh 1:6a Be strong and courageous
Josh 1:7a Only be strong and courageous
Josh 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
On and on we are told it as a command. He answered our prayers today. He has the final outcome in hand as well but I have a feeling He my sanctification is in the process and not the outcome (I hate it when that happens!!). I just need a little time to regain my footing and new normal. JJ is still our sweet JJ no matter what these diagnoses are, no matter what the interventions are, no matter if he is developmentally on track or not. God has the control, I do not, and today God is probably sitting back laughing at me saying, "one day you will finally consistently get it that you are not the one in control woman! Trust me!"
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