Well, Mr. X is still not eating as well as he should be. He goes in for his bimonthly height/weight check on Friday morning and I am dreading it. He looks like he has lost weight and if he has lost a significant amount I'll have to call GI and possibly increase X back up to 3 tube feedings a day. sigh He will very disappointed and frustrated if he has to go back up to three feedings.
He has also thrown up his late evening feedings two nights in a row (one was at the rock climbing center and it ended up in the rubber mulch. Craig was with him. Not sure how that one got cleaned up). Today I gave him his second feeding after lunch because he refused to eat saying he wasn't hungry (but he tolerated his feeding fine). I feel like we are going backwards and it is all because of that stupid cold. I wish we could figure out what happens with his gut whenever he gets sick. It's frustrating for him and us.
X is still a little congested, so maybe he is still fighting this cold. Who knows? He also has seasonal allergies, so they could be messing everything up as well. Or maybe it is something completely unrelated that no one would ever think about of. He has also had more meltdowns than usual, which is related to not getting enough calories, which makes for loud and exhausting days. I know he also worries when he throws up, so I am sure the PTSD is involved as well.
That's about all that is going on around here. Halloween is in a couple days so X is looking forward to that. He is going to be a rotisserie chicken and we finished his costume last night. You have to use your imagination to see that it is a cooked chicken, but X is happy with it, so that is all that matters.
Even though we are still dealing with the effects of the cold, things are going pretty well. The vomiting has me concerned because that isn't typical for X so far out from a cold. It's hard not to panic and remember when he was hospitalized for 3 weeks for uncontrollable vomiting. That started with a virus as well. Praying and hoping this situation doesn't turn into that and that he starts eating well again. And that he doesn't need to go back to three feedings. The three feedings wouldn't be the end of the world, but it would suck.
Wednesday, October 29, 2014
Saturday, October 18, 2014
Dumb Germs
The cold and flu season has begun. Ugh. X got a head cold yesterday which resulted in him throwing up from 7:00 pm last night until 6:00 am this morning. All from a stupid head cold. It's heartbreaking to see him so miserable from something that should be a minor thing. I believe part of the problem is his motility slows way down when he is sick. In order to prove that, we would need him to eat oatmeal while he is sick and X-ray his gut for two hours to see how fast it moves through his system. That isn't going to happen because he can't keep anything down and I don't know what anyone would do about it. There are some drugs, but when he tried one he had neurological side effects and it didn't do much for him anyway. I also believe part of the gagging and throwing up is from the NG tube he first had. That tube down his nose and throat caused so many problems for him and was so freakin' uncomfortable that whenever he has a sore throat or gunk in his throat he gets very worked up. I will regret getting the NG tube for the rest of my life.
At X's last height and weight appointment on Tuesday he was down a pound (but grew 1/4 inch). I am guessing he lost a pound because he was fighting this cold. Yesterday he only ate a couple Popsicles and today he hasn't eaten anything. I'm sure he has lost at least one more pound. I haven't heard back from the GI doctor regarding dropping down to one tube feeding, but I know the answer will be "no" because of this cold. I wouldn't be comfortable dropping down to one feeding at this point anyway. We may have to wait until summer to get through the cold and flu stuff. Which is okay. His health is more important than the number of feedings he gets.
So, that's where X is at today. Even though he had such a miserable night and didn't get any sleep he was still entertaining us a bit this afternoon (until he threw up again). Today I am thankful for a comfy big couch (it comes in very handy on long nights), Craig had this weekend off so I've had help, and I am thankful I can use the tube to hydrate X with pedialyte---that makes a huge difference for him.
At X's last height and weight appointment on Tuesday he was down a pound (but grew 1/4 inch). I am guessing he lost a pound because he was fighting this cold. Yesterday he only ate a couple Popsicles and today he hasn't eaten anything. I'm sure he has lost at least one more pound. I haven't heard back from the GI doctor regarding dropping down to one tube feeding, but I know the answer will be "no" because of this cold. I wouldn't be comfortable dropping down to one feeding at this point anyway. We may have to wait until summer to get through the cold and flu stuff. Which is okay. His health is more important than the number of feedings he gets.
So, that's where X is at today. Even though he had such a miserable night and didn't get any sleep he was still entertaining us a bit this afternoon (until he threw up again). Today I am thankful for a comfy big couch (it comes in very handy on long nights), Craig had this weekend off so I've had help, and I am thankful I can use the tube to hydrate X with pedialyte---that makes a huge difference for him.
Tuesday, October 14, 2014
Not Puberty
Bloodwork results are in and X is not in puberty. What a relief! X is definitely not in puberty and does not have Congenital Adrenal Hyperplasia. We still do not know why his bone age is advanced 2.5+ years and what that will mean for him growth wise . We will go back for a follow up and another bone age x-ray in 6 months. When I spoke with the nurse she mentioned that many children will catch up with their bone age, so I am hoping and praying this is true for X.
I am relieved to hear this news, and at the same time am scared that they are missing something. I always hope that a reason will be found for X's issues and there will be a quick and easy fix for them. All we seem to get are more questions and unknowns. No one can tell us why his bone age is so advanced (and why his wrist shows delayed bone age while the growth plates in his fingers shows advanced bone age). I am very happy he is not in puberty. Very happy. I am also frustrated that we have more questions. This is such a crazy journey with X. I suppose I shouldn't expect anything less considering X's personality.
X had his feeding button changed today. That procedure is becoming less traumatic each time. (It takes about 3 minutes). We could change it here at home ourselves, but that's not happening because, a) X would definitely not be able to handle that with his PTSD and b) I would probably pass out ( I can't even watch them change it out. I tried today, but thought I was going to faint, so that was a no-go. I totally suck when it comes to things like that). When I told him yesterday about the upcoming change he was a little scared, but didn't scream and was still able to enjoy the day/night without obsessing over it. This morning he was nervous, but was able to work through it. These are very big steps for him and I am so proud of him. He really is a brave little guy.
Tomorrow I am going to ask if we can try to go down to 1 tube feeding a day. ONE. I hope we get the okay for that. Right now X gets one feeding in the am for 35 minutes and one feeding at night for 35 minutes. This means he is usually up until 9:00pm so he can have time to digest any food he's eaten in the evening before getting his feeding. His hunger doesn't usually kick in until around 3:00 pm and especially in the evening. I believe that is because of all the continual feeds he had as well as the night feeds he had. We still need to reset his hunger clock. Hopefully by getting rid of the last feeding at night that will help.
All is going well over here. We are heading into the cold/flu season and that can always be dicey for X, but I am hoping that he will do better this winter as his gut seems to be doing so much better.
Right now the biggest challenge with X is his halloween costume. He wants to be a rotisserie chicken.
It's nice to update with good news. I can't wait for the update that X is tube free and it is looking like we are getting closer to that update.
I am relieved to hear this news, and at the same time am scared that they are missing something. I always hope that a reason will be found for X's issues and there will be a quick and easy fix for them. All we seem to get are more questions and unknowns. No one can tell us why his bone age is so advanced (and why his wrist shows delayed bone age while the growth plates in his fingers shows advanced bone age). I am very happy he is not in puberty. Very happy. I am also frustrated that we have more questions. This is such a crazy journey with X. I suppose I shouldn't expect anything less considering X's personality.
X had his feeding button changed today. That procedure is becoming less traumatic each time. (It takes about 3 minutes). We could change it here at home ourselves, but that's not happening because, a) X would definitely not be able to handle that with his PTSD and b) I would probably pass out ( I can't even watch them change it out. I tried today, but thought I was going to faint, so that was a no-go. I totally suck when it comes to things like that). When I told him yesterday about the upcoming change he was a little scared, but didn't scream and was still able to enjoy the day/night without obsessing over it. This morning he was nervous, but was able to work through it. These are very big steps for him and I am so proud of him. He really is a brave little guy.
Tomorrow I am going to ask if we can try to go down to 1 tube feeding a day. ONE. I hope we get the okay for that. Right now X gets one feeding in the am for 35 minutes and one feeding at night for 35 minutes. This means he is usually up until 9:00pm so he can have time to digest any food he's eaten in the evening before getting his feeding. His hunger doesn't usually kick in until around 3:00 pm and especially in the evening. I believe that is because of all the continual feeds he had as well as the night feeds he had. We still need to reset his hunger clock. Hopefully by getting rid of the last feeding at night that will help.
All is going well over here. We are heading into the cold/flu season and that can always be dicey for X, but I am hoping that he will do better this winter as his gut seems to be doing so much better.
Right now the biggest challenge with X is his halloween costume. He wants to be a rotisserie chicken.
It's nice to update with good news. I can't wait for the update that X is tube free and it is looking like we are getting closer to that update.
Friday, September 26, 2014
update
We have one of the labs back for X's blood work. The lutenizing hormone is normal. This hormone along with FSH (i can't remember what it stands for at the moment) control testosterone and I think another one or two. My hope and prayer at this point is that because the lutenizing hormone is normal, the other hormones will be normal as well (although nothing seems to go as it should with X, so....). Hoping we get those results back soon as well. Nothing more to report other than X ate an entire piece of pizza yesterday. That is the first time he has ever done that! WE are pretty pumped over here about that.
Tuesday, September 23, 2014
Waiting
This morning, X had his blood drawn to see if he is beginning puberty early. I don't know how long it will take to get the results back. Part of me wants them right away and part of me wants to wait a while. I'm almost dreading the results because if he isn't starting puberty early (this would be the best possible result) it means something weird is going on with his body which may mean more tests and possibly more specialists. If he is starting puberty early, well, that's just not good. There was talk of possibly MRI'ng his pineal gland. The blood work will tell us which direction to take.
X had to train in a new person at our clinic's lab today. The person who normally takes his blood moved to a different clinic (I almost cried when
I found out. She was amazing with X and found his vein on the first try every time. They had a good relationship and a system worked out).
The new person was not very talkative. X had no problem pointing out when she did something "wrong". When she had a hard time finding his vein, X said: " why is this taking you so long? They usually get this right away. This is taking longer than usual". When she started collecting his blood...X:" those vials are a lot bigger than they use. They use a lot smaller vials". When she removed the band around his arm after taking his blood, " ummm, they take that off before they are done taking my blood. They don't leave it on so long." He isn't snotty when he says this stuff. It is all very matter of fact. I just explained that X was a pro at blood draws and that he and the other technician had a system worked out. Nothing like starting out your day with a 6 year old telling you how to do your job.
We are also looking into cranio-sacral (spelling?) therapy as well as kinesiology for X. Cranio sacral therapy helps the sympathetic system calm down (responsible for flight or fight) so his body can rest which would help his adrenals. Kinesiology would help with adrenals. I think this could also help with the PTSD.
We do have great news regarding X's height and weight. He is now 3'10 &1/4 inches and 48.9 pounds. That is the most he has ever weighed and he was able to get to that point with only 2 tube feedings a day. He is eating a lot more on his own and actually feeling hungry. I am hearing the words, "Mom, I'm hungry" several times a day now. Unbelievable. (Of course I wrestle with the thought of, "well, of course he's hungry, he's probably starting puberty". Still struggling to just enjoy the moment)
Non-medical news:
This weekend was an incredible weekend for X. My brother, Uncle Terry was up with two of his friends to scout locations for a movie they will be filming in November. X found his people. These three guys "get" X and X adopted my brother's friends as his uncles. I've never seen X shine like he did this weekend and I've never seen him bond with anyone or become attached to anyone as quickly and as intensely as he did this weekend. It made my heart melt to see him in his element. This weekend was truly a gift to X. It was like X had known my brother's friends his entire life. My other brother and I were talking about it this morning and he made the point that Uncle Terry and his friends are entertainers and that is what X is, which explains it all. Last night X asked me how many uncles he had. I told him he had three. He corrected me and said, and I have Uncle Clayton and Uncle Noel. At the blood draw this morning, the technician (is that what they're called? You'd think I would know this after all of X's blood draws) commented on the early morning because X was yawning so much. I mentioned we had a very late night last night because it was my brother's last night in town. X then said, "yeah, and Uncle Terry brought his two best friends. They're my uncles".
Monday, September 8, 2014
Another Puzzle to Add to the Puzzle of X (and has it really been over a year since I posted)
It has been over a year since I last posted. That is unbelievable. We've been so busy with life that posting obviously hasn't been a priority. A lot has changed since the last post.
I was looking back, and in one of the last posts I mentioned X was getting 5-6 bolus feedings a day. Well, we are down to 2 bolus feedings a day. That is an incredible achievement for X!! And a whole lot of freedom!!!
The rate of X's bolus feed is maxed out on his feeding pump and he is able to tolerate 350ml over 35 minutes. He was no where near that a year ago. The two feedings means he is free to enjoy life without wearing a backpack with a feeding pump and feeding bag full of formula the majority of the day. It also means I do not need to carry around a cooler bag, bottle warmer, backpack, feeding pump, bag filled with formula and try to plan around all these other feedings while giving him as normal and active life as a child his age should have. It means X is not interrupted while playing to get "hooked up" to his feeding pump. He has one feeding right away in the morning and one feeding before bed. That's. IT. It has taken me a while to get used to this new, liberating schedule. I used to have timers set everywhere so I wouldn't forget to give him his feedings because they needed to be given 2 hours after the previous feeding ended so we could get them all in during the day and still give him some time to feel hungry so he could eat orally. That was one crazy balancing act that I hope never to go back to. We first attempted the 2 feeding schedule August 5, 2014. It went well the 1st week. It did not go well the 2nd week. He wasn't eating or getting enough nutrition or calories so there were melt downs aplenty and lots of tears (his and mine) and low energy. We went back to the 3 feeding schedule for a week and attempted the 2 feeding schedule 8/28 and so far, so good. He has actually gained weight is growing. in fact, he is sticking to the 25th percentile for growth and 50th percentile for weight so all is good. His GI doc is very, very happy with how well X is doing.
X himself was so excited to go down to 2 feedings, he was telling everyone (and he doesn't talk about his feeding stuff much to others).
This doesn't mean that eating is easy for X. It takes a lot of encouraging (a lot) and often bribing to get him to eat at a meal. He still doesn't feel hungry very often. Even after playing all day outside and tearing around. He is beginning to push through that and he will attempt to eat something at mealtimes. Usually if he just gets started or sits at the table long enough he will eat a decent meal. But it is hard because he does not feel hungry. His oral aversions and gagging are completely gone though. GONE! No more gagging or making faces like he is going to puke when he looks at food. If something does not look good to him, he will at least attempt a small bite before making a decision about it (a HUGE shout out to his speech therapist and OT who used the SOS feeding program).
When X becomes ill (even a small head cold) he does continue to deal with vomiting and nausea and no appetite. I believe his motility slows down for whatever reason. And he will drop 2-3 pounds in 1-2 days. That part is still frustrating, but hopefully with time and maturation that will also resolve itself. But we have had a lot of success and victories with his feeding over this past year!
Two new issues have cropped up this past year as well.
We have been working with a professional because X has PTSD from all of the procedures (many of them terrifying and horribly painful while not under sedation) and experiences (I regret the NG tube with all my heart) he has gone through since August 2010. (remember when they told us he would only need the NG tube for 3 months and that would be it?)
X has responded well to the help and he is working hard. Because he was so young when all of this started, his nervous system has become hardwired to his "fight or flight" system. His system chooses "fight" 99.9% of the time. Before therapy, X was raging 15-20 times daily over minor irritations and frustrations as well as being accidentally bumped or surprised or a routine that was disturbed. Our home was loud, tense, anxious and we were all walking on eggshells. If he would get hurt he would not come to me or anyone for comfort, but would rage and yell and resist help (when he obviously needed help with a big scrape) and would take care of it himself. Our home was not a peaceful home. For me, it was mentally, physically, and spiritually exhausting. And it was heart breaking to see this little boy so full of rage who resisted any comfort and was out of control. It was also frustrating because I felt to helpless and because my nervous system was being taxed from all of the raging. I pretty much disappeared and isolated myself because of the exhaustion and bone weariness I felt. Now, X has some tools to use and he does use them. He comes to me for comfort when he gets hurt (his reactions often seem over-the-top to others, but we are thrilled he is seeking comfort instead of raging) and he is able to calm himself and ask for help when he needs help calming down. It doesn't mean our home is perfectly peaceful. It isn't. But we are in a much better place than we were in before therapy. I wrestled with sharing this piece of X's life, but therapy has helped so, so much that if there is anyone else out there who happens to come across this that is in the same situation, I want them to know there is help!
Today we had a follow up with an endocrinologist. X has been growing fine, so I was going to ask if we still needed to see this doc. The doc said, "He is doing so well I don't think you need to be seen by us anymore". Hallelujah!!
Then he looked at X's hand x-ray for bone age. (Here is another puzzle) X is almost 3 years ahead of schedule for bone age (not bone length, just age) (Normal variation is 1 year behind to 1 year ahead). What does that mean? Well, it means he could be heading into early puberty. (he isn't even 7 yet) This is the way I understood things (which may not be correct). Because X had stopped growing and struggled so much with weight gain as a baby and was so ill with his allergies--it stressed his system (particularly his adrenals). Because of all the trauma and stress of procedures and all he had been through and stress hormones activated--it stressed his system (adrenals again). This fired up the adrenals with stress hormones and his body was trying to catch up with growth because he had stopped growing. The adrenals are connected to turning on the hormones of puberty. At the age of 6, boys are already getting a minuscule amount of male hormones starting, but X may be getting more or getting ready to start a lot of them (I think). The doc ordered some blood work (we will do in our home clinic). He said he would be very surprised to see anything in the blood work suggesting early puberty, but needs to check it out. He also said we need to keep coming to see him (boo). He also said X's bone age being so far ahead is very unusual (of course). I asked if this could explain some moodiness we have been seeing and he said it could definitely be contributing. So, now we need to distinguish between PTSD and possible moodiness related to hormones. I don't know what this means for X. I didn't ask a lot because 1) I was taken off guard, 2)X was in the room, 3)I didn't know what to ask. I think, maybe it could mean that he would get all these hormones too soon and then they would shut off too soon and he would stop growing too soon??? But don't quote me on that. So basically I could have 2 boys going through puberty at the same time who are 5 years apart.
To be honest, I was (and am) heart broken, discouraged and frustrated by this news. To hear that the stress of X's life events (even though he is still little) have possibly interfered with the normal development of his hormones and could alter the way he matures and grows breaks my heart. into pieces. It's discouraging and frustrating because it seems like whenever we get to a place of stability and we are moving forward and seeing the light at the end of the tunnel, some other weird thing pops up that doesn't make sense to the professionals and involves more blood draws and tests which are stressful for X.
As discouraging as this part of the day was, I do have so many things to be thankful for. My mom spent the night so she could get up before 5am to be on the road with us at 5:30am to keep me company on the 3 hour drive to the dr appt. She was also there to laugh with as I was loosing my mind driving home. That was huge. The weather was perfect. N was able to spend the night at his friend's house so he didn't have to get up so early and come with us. While stopped for a train, I noticed I was next to a willow tree that was blowing in the wind--one of my favorite things to watch. X did not need to get the blood drawn today (that is another biggie). X is being followed by professionals. I felt God was making His presence known more today and it was comforting. I do wrestle with Him but I do know He is there and He is taking care of everything (not necessarily how I would) and I still have peace and joy (which somedays I find amazing and somedays I don't feel it as much). My heart is heavy tonight as I look at my son and wonder what the future holds for him, but at the same time I have some peace resting in Him.
On a side note, the residents at the clinic today asked X what his favorite subject was. He replied, "playing video games". Proud homeschooling moment there.
If you made it to the end of this post you should receive some sort of reward, because this is one crazy long post.
I was looking back, and in one of the last posts I mentioned X was getting 5-6 bolus feedings a day. Well, we are down to 2 bolus feedings a day. That is an incredible achievement for X!! And a whole lot of freedom!!!
The rate of X's bolus feed is maxed out on his feeding pump and he is able to tolerate 350ml over 35 minutes. He was no where near that a year ago. The two feedings means he is free to enjoy life without wearing a backpack with a feeding pump and feeding bag full of formula the majority of the day. It also means I do not need to carry around a cooler bag, bottle warmer, backpack, feeding pump, bag filled with formula and try to plan around all these other feedings while giving him as normal and active life as a child his age should have. It means X is not interrupted while playing to get "hooked up" to his feeding pump. He has one feeding right away in the morning and one feeding before bed. That's. IT. It has taken me a while to get used to this new, liberating schedule. I used to have timers set everywhere so I wouldn't forget to give him his feedings because they needed to be given 2 hours after the previous feeding ended so we could get them all in during the day and still give him some time to feel hungry so he could eat orally. That was one crazy balancing act that I hope never to go back to. We first attempted the 2 feeding schedule August 5, 2014. It went well the 1st week. It did not go well the 2nd week. He wasn't eating or getting enough nutrition or calories so there were melt downs aplenty and lots of tears (his and mine) and low energy. We went back to the 3 feeding schedule for a week and attempted the 2 feeding schedule 8/28 and so far, so good. He has actually gained weight is growing. in fact, he is sticking to the 25th percentile for growth and 50th percentile for weight so all is good. His GI doc is very, very happy with how well X is doing.
X himself was so excited to go down to 2 feedings, he was telling everyone (and he doesn't talk about his feeding stuff much to others).
This doesn't mean that eating is easy for X. It takes a lot of encouraging (a lot) and often bribing to get him to eat at a meal. He still doesn't feel hungry very often. Even after playing all day outside and tearing around. He is beginning to push through that and he will attempt to eat something at mealtimes. Usually if he just gets started or sits at the table long enough he will eat a decent meal. But it is hard because he does not feel hungry. His oral aversions and gagging are completely gone though. GONE! No more gagging or making faces like he is going to puke when he looks at food. If something does not look good to him, he will at least attempt a small bite before making a decision about it (a HUGE shout out to his speech therapist and OT who used the SOS feeding program).
When X becomes ill (even a small head cold) he does continue to deal with vomiting and nausea and no appetite. I believe his motility slows down for whatever reason. And he will drop 2-3 pounds in 1-2 days. That part is still frustrating, but hopefully with time and maturation that will also resolve itself. But we have had a lot of success and victories with his feeding over this past year!
Two new issues have cropped up this past year as well.
We have been working with a professional because X has PTSD from all of the procedures (many of them terrifying and horribly painful while not under sedation) and experiences (I regret the NG tube with all my heart) he has gone through since August 2010. (remember when they told us he would only need the NG tube for 3 months and that would be it?)
X has responded well to the help and he is working hard. Because he was so young when all of this started, his nervous system has become hardwired to his "fight or flight" system. His system chooses "fight" 99.9% of the time. Before therapy, X was raging 15-20 times daily over minor irritations and frustrations as well as being accidentally bumped or surprised or a routine that was disturbed. Our home was loud, tense, anxious and we were all walking on eggshells. If he would get hurt he would not come to me or anyone for comfort, but would rage and yell and resist help (when he obviously needed help with a big scrape) and would take care of it himself. Our home was not a peaceful home. For me, it was mentally, physically, and spiritually exhausting. And it was heart breaking to see this little boy so full of rage who resisted any comfort and was out of control. It was also frustrating because I felt to helpless and because my nervous system was being taxed from all of the raging. I pretty much disappeared and isolated myself because of the exhaustion and bone weariness I felt. Now, X has some tools to use and he does use them. He comes to me for comfort when he gets hurt (his reactions often seem over-the-top to others, but we are thrilled he is seeking comfort instead of raging) and he is able to calm himself and ask for help when he needs help calming down. It doesn't mean our home is perfectly peaceful. It isn't. But we are in a much better place than we were in before therapy. I wrestled with sharing this piece of X's life, but therapy has helped so, so much that if there is anyone else out there who happens to come across this that is in the same situation, I want them to know there is help!
Today we had a follow up with an endocrinologist. X has been growing fine, so I was going to ask if we still needed to see this doc. The doc said, "He is doing so well I don't think you need to be seen by us anymore". Hallelujah!!
Then he looked at X's hand x-ray for bone age. (Here is another puzzle) X is almost 3 years ahead of schedule for bone age (not bone length, just age) (Normal variation is 1 year behind to 1 year ahead). What does that mean? Well, it means he could be heading into early puberty. (he isn't even 7 yet) This is the way I understood things (which may not be correct). Because X had stopped growing and struggled so much with weight gain as a baby and was so ill with his allergies--it stressed his system (particularly his adrenals). Because of all the trauma and stress of procedures and all he had been through and stress hormones activated--it stressed his system (adrenals again). This fired up the adrenals with stress hormones and his body was trying to catch up with growth because he had stopped growing. The adrenals are connected to turning on the hormones of puberty. At the age of 6, boys are already getting a minuscule amount of male hormones starting, but X may be getting more or getting ready to start a lot of them (I think). The doc ordered some blood work (we will do in our home clinic). He said he would be very surprised to see anything in the blood work suggesting early puberty, but needs to check it out. He also said we need to keep coming to see him (boo). He also said X's bone age being so far ahead is very unusual (of course). I asked if this could explain some moodiness we have been seeing and he said it could definitely be contributing. So, now we need to distinguish between PTSD and possible moodiness related to hormones. I don't know what this means for X. I didn't ask a lot because 1) I was taken off guard, 2)X was in the room, 3)I didn't know what to ask. I think, maybe it could mean that he would get all these hormones too soon and then they would shut off too soon and he would stop growing too soon??? But don't quote me on that. So basically I could have 2 boys going through puberty at the same time who are 5 years apart.
To be honest, I was (and am) heart broken, discouraged and frustrated by this news. To hear that the stress of X's life events (even though he is still little) have possibly interfered with the normal development of his hormones and could alter the way he matures and grows breaks my heart. into pieces. It's discouraging and frustrating because it seems like whenever we get to a place of stability and we are moving forward and seeing the light at the end of the tunnel, some other weird thing pops up that doesn't make sense to the professionals and involves more blood draws and tests which are stressful for X.
As discouraging as this part of the day was, I do have so many things to be thankful for. My mom spent the night so she could get up before 5am to be on the road with us at 5:30am to keep me company on the 3 hour drive to the dr appt. She was also there to laugh with as I was loosing my mind driving home. That was huge. The weather was perfect. N was able to spend the night at his friend's house so he didn't have to get up so early and come with us. While stopped for a train, I noticed I was next to a willow tree that was blowing in the wind--one of my favorite things to watch. X did not need to get the blood drawn today (that is another biggie). X is being followed by professionals. I felt God was making His presence known more today and it was comforting. I do wrestle with Him but I do know He is there and He is taking care of everything (not necessarily how I would) and I still have peace and joy (which somedays I find amazing and somedays I don't feel it as much). My heart is heavy tonight as I look at my son and wonder what the future holds for him, but at the same time I have some peace resting in Him.
On a side note, the residents at the clinic today asked X what his favorite subject was. He replied, "playing video games". Proud homeschooling moment there.
If you made it to the end of this post you should receive some sort of reward, because this is one crazy long post.
Sunday, August 25, 2013
Full Moon
Thursday night was a full moon. We could tell at our house. X got a nasty cold that his older brother had. This meant 2 hours of sleep with a lot of nausea, crying, screaming and PTSD like reactions to his sore throat. Ever since he had the ng tube ( feeding tube that went down his nose) he panics if his nose or throat hurts. It's horrible (we are trying to find someone to help him with this, but that is proving more difficult than it should).
On Thursday night the hubby was hit by drunk driver. He is okay, but the car is totaled ( and this was the first night of C's vacation) This driver stopped in front of a bar, missed his parking spot, stopped, put his van in reverse and hit the gas. C was stopped and honked his horn and tried to back up, but the guy didn't hear him. He hit C so hard both air bags went off. This person was extremely drunk and his friend who was with him was worse off. C said it was like something out of Cops. The friend of the driver was asking C and a witness if they had any weed. Then the driver told his friend he had a lot of DUIs and said he was going to wait for the police in the bar. Well, he disappeared and his friend told the police he was the driver. It's a mess. We don't know if the driver was insured, so we may be responsible for our deductible. The police looked for the driver, but couldn't find him. They impounded his vehicle, so hopefully he goes to claim it and they can get him then. Ugh. We do have a nice rental car our insurance is paying for. The boys have been enjoying that.
X is starting to tolerate his feeds today. They are small, but he isn't nauseas and isn't throwing up. He also has energy and is not dehydrated, so this is all good news. This is the first big illness (for him) with just the gtube, so it was scary, but he made it and we stayed out of the hospital, so I think we are good.
Both boys have been sick since Tuesday night and we have been stuck at home this whole time. We are all going crazy. I work tomorrow, so I will get out of the house then. Yay!
- Posted using BlogPress from my iPad
On Thursday night the hubby was hit by drunk driver. He is okay, but the car is totaled ( and this was the first night of C's vacation) This driver stopped in front of a bar, missed his parking spot, stopped, put his van in reverse and hit the gas. C was stopped and honked his horn and tried to back up, but the guy didn't hear him. He hit C so hard both air bags went off. This person was extremely drunk and his friend who was with him was worse off. C said it was like something out of Cops. The friend of the driver was asking C and a witness if they had any weed. Then the driver told his friend he had a lot of DUIs and said he was going to wait for the police in the bar. Well, he disappeared and his friend told the police he was the driver. It's a mess. We don't know if the driver was insured, so we may be responsible for our deductible. The police looked for the driver, but couldn't find him. They impounded his vehicle, so hopefully he goes to claim it and they can get him then. Ugh. We do have a nice rental car our insurance is paying for. The boys have been enjoying that.
X is starting to tolerate his feeds today. They are small, but he isn't nauseas and isn't throwing up. He also has energy and is not dehydrated, so this is all good news. This is the first big illness (for him) with just the gtube, so it was scary, but he made it and we stayed out of the hospital, so I think we are good.
Both boys have been sick since Tuesday night and we have been stuck at home this whole time. We are all going crazy. I work tomorrow, so I will get out of the house then. Yay!
- Posted using BlogPress from my iPad
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