Some encouraging words for my friends that are walking hard roads right now. I received this in a card from a friend last year. She combined the NLT, amplified and message for it to read like this. I love the message, it encourages my soul!
"Blessed be the God and Father of our Lord Jesus Christ, the Father of sympathy, (pity and mercy) and the God who is the source of every comfort, consolation, and encouragement. God of all healing counsel! He comforts us in all our troubles...comes alongside us when we go through hard times, and before you know it he brings us alongside someone else who is going through hard times so that we can be there for that person - we will be able to give them the same comfort, consolation and encouragement that God has given us. We have plenty of hard times that come from following the Messiah - the more we suffer for Christ the more God will shower us with His comfort. Our hard times are no more so than the good times of His healing comfort - we get a full measure of that too!" 2 Corinthians 1:3-5
love. life. faith.
Showing posts with label encouragement. Show all posts
Showing posts with label encouragement. Show all posts
Thursday, November 15, 2012
Wednesday, May 20, 2009
Some updates
May is a busy month for our family and I am so behind in blogging! Hewitt continues to be seizure free, although he had a fever last week and I could have sworn I saw some hand twitching in his sleep, but in the daytime we never saw any proof of it. I'll never know for sure, but rejoicing that they're still gone.
Praises - Hewitt is potty trained in the daytime - even through nap. I was beginning to wonder if this would EVER happen and haven't pushed it because of everything else he's been going through, but I feel like we're finally over the hump! (for now anyway)
Last week he woke up having hallucinations about spiders and was up for about 4 hours convinced there were spiders everywhere, including crawling on him and us. It was absolutely horrible, but thankfully it's all over and we haven't seen any more of this night time behavior since. We think it was most likely his medicine, but we're starting to see this side of Hewitt we haven't seen before...he's scared by things fairly easily. Much easier than his brothers. This has really caught us off guard as he tends to be the "tough" guy around here. It's nice to see his sensitive side though. This week there's been a bear roaming around Shoreline and he was very fearful that it was going to claw it's way into our house!
He is memorizing whole books and reciting them back to us as he looks through the pictures. This is amazing and such sweet music to our ears. Not only that but he's retaining all kinds of songs not only from the radio, but also from church. It's so fun to see him engage and have interest in these things again.
Prayer requests - Next week is going to be a very busy week for the whole family. Hewitt does not like leaving home often and we're going to be going A LOT. A few of the things happening:
-we're in the process of moving across the neighborhood, we'll be closer to the church, closer to the school we want for the kids and saving some money. we're halfway moved, but need to finish this weekend
- we have a civil court case on wednesday (27th) morning very early that we're nervous about. someone is trying to squeak 5k out of us, and we hope that the truth will prevail and we will not have to be stuck with this debt
- our annual graduation celebration is the 29th, the friday following our court date and we have much preparation to do for this. we have lots of help, but it's still a lot to be done in one week - hayden will be taking the teens to an event the following morning (30th) as well
- the following monday (june 1st) hewitt has a 24-48 hour eeg scheduled. we're checking up on his progress, trying to see if he's having anything going on in his sleep or seizures that we're not seeing. he still has days that he acts like he's had them even though we're not seeing anything.
So, if you're still with me. We covet your prayers and appreciate your support through all of this. My next update will most likely be after our court date or after the EEG.
Praises - Hewitt is potty trained in the daytime - even through nap. I was beginning to wonder if this would EVER happen and haven't pushed it because of everything else he's been going through, but I feel like we're finally over the hump! (for now anyway)
Last week he woke up having hallucinations about spiders and was up for about 4 hours convinced there were spiders everywhere, including crawling on him and us. It was absolutely horrible, but thankfully it's all over and we haven't seen any more of this night time behavior since. We think it was most likely his medicine, but we're starting to see this side of Hewitt we haven't seen before...he's scared by things fairly easily. Much easier than his brothers. This has really caught us off guard as he tends to be the "tough" guy around here. It's nice to see his sensitive side though. This week there's been a bear roaming around Shoreline and he was very fearful that it was going to claw it's way into our house!
He is memorizing whole books and reciting them back to us as he looks through the pictures. This is amazing and such sweet music to our ears. Not only that but he's retaining all kinds of songs not only from the radio, but also from church. It's so fun to see him engage and have interest in these things again.
Prayer requests - Next week is going to be a very busy week for the whole family. Hewitt does not like leaving home often and we're going to be going A LOT. A few of the things happening:
-we're in the process of moving across the neighborhood, we'll be closer to the church, closer to the school we want for the kids and saving some money. we're halfway moved, but need to finish this weekend
- we have a civil court case on wednesday (27th) morning very early that we're nervous about. someone is trying to squeak 5k out of us, and we hope that the truth will prevail and we will not have to be stuck with this debt
- our annual graduation celebration is the 29th, the friday following our court date and we have much preparation to do for this. we have lots of help, but it's still a lot to be done in one week - hayden will be taking the teens to an event the following morning (30th) as well
- the following monday (june 1st) hewitt has a 24-48 hour eeg scheduled. we're checking up on his progress, trying to see if he's having anything going on in his sleep or seizures that we're not seeing. he still has days that he acts like he's had them even though we're not seeing anything.
So, if you're still with me. We covet your prayers and appreciate your support through all of this. My next update will most likely be after our court date or after the EEG.
Saturday, March 14, 2009
Still seizure free
Yesterday was 6 weeks without any little seizures! 4 weeks without any at all. We continue to enjoy having our boy back, and love watching him play like a 3 year old should. We just praise God for this change and are trying to enjoy it while it lasts! Thanks for your continued prayers. He is still struggling with getting a full nights sleep. He wakes often, scared and crying. We think it's a side effect of the new med and hope it goes away soon. It has been 6 weeks though, so I'm beginning to wonder! It would be a prayer request for the whole family. He often wakes up the other boys when he wakes up screaming or crying, not to mention us! We are all slightly sleep deprived these days. I will try to get an update again soon.
Wednesday, February 04, 2009
He's Back
I've been waiting to post this because it seems like whenever I do things change again, but I'll post anyway because it's just so exciting.
Hewitt hasn't had a seizure in 6 days.
It's amazing. Last week, Friday, Saturday, Sunday, Monday and Tuesday, we were absolutely distraught because he was having so many. Last Sunday we finally gave him his emergency meds to stop it because we thought he was in non convulsive status. He was just sitting, barely talking and constantly drooling. You couldn't carry a conversation with him. It was heartbreaking. Sunday, Titus came down with a fever and then passed it on to all the other kids thoroughout the week. Hewitt was the last to get it. It was the first serious fever he's had since we've started this whole journey and if all the seizures he was having before weren't enough, he started having more. In the time he was actually aware and conversational he was mean and angry and hard to deal with. We got his fever under control and the seizures slowed down and then on Thursday, we added a new med, Euthosuximide. It's a med to control absence seizures. He's on a fairly low dose, and only once a day. But, Friday, he woke up alert, happy and hasn't had a seizure since. He has been a doll all week. It's like we have him back completely. Usually when the seizures subside the behavior issues begin, but so far, things have been great. Still doing normal 3 year old things, but no more psychotic anger episodes. He's trying to obey, kissing and hugging everyone and he's told me twice (without prompting) that he doesn't have "ceasers" anymore. He's adorable and we're soaking up every minute of him.
Things are good now, but we know that could change at any moment. We certainly try not to live in fear of the seizures returning because it's way too early to tell if this med will make this change long term. But, we're learning (slowly)to take today and deal with what we've got!
He had an evaluation at the local school district yesterday and today to see if he will be able to be in a special preschool program for kids with developmental delays. This has been hard to swallow, but I think it will be good for him socially and developmentally. Without the seizures, he did great on most of the testing. It continues to amaze me how quickly his body recovers when they stop. We wait now to see what services they will offer and when he will start.
Hewitt hasn't had a seizure in 6 days.
It's amazing. Last week, Friday, Saturday, Sunday, Monday and Tuesday, we were absolutely distraught because he was having so many. Last Sunday we finally gave him his emergency meds to stop it because we thought he was in non convulsive status. He was just sitting, barely talking and constantly drooling. You couldn't carry a conversation with him. It was heartbreaking. Sunday, Titus came down with a fever and then passed it on to all the other kids thoroughout the week. Hewitt was the last to get it. It was the first serious fever he's had since we've started this whole journey and if all the seizures he was having before weren't enough, he started having more. In the time he was actually aware and conversational he was mean and angry and hard to deal with. We got his fever under control and the seizures slowed down and then on Thursday, we added a new med, Euthosuximide. It's a med to control absence seizures. He's on a fairly low dose, and only once a day. But, Friday, he woke up alert, happy and hasn't had a seizure since. He has been a doll all week. It's like we have him back completely. Usually when the seizures subside the behavior issues begin, but so far, things have been great. Still doing normal 3 year old things, but no more psychotic anger episodes. He's trying to obey, kissing and hugging everyone and he's told me twice (without prompting) that he doesn't have "ceasers" anymore. He's adorable and we're soaking up every minute of him.
Things are good now, but we know that could change at any moment. We certainly try not to live in fear of the seizures returning because it's way too early to tell if this med will make this change long term. But, we're learning (slowly)to take today and deal with what we've got!
He had an evaluation at the local school district yesterday and today to see if he will be able to be in a special preschool program for kids with developmental delays. This has been hard to swallow, but I think it will be good for him socially and developmentally. Without the seizures, he did great on most of the testing. It continues to amaze me how quickly his body recovers when they stop. We wait now to see what services they will offer and when he will start.
Friday, November 14, 2008
Feeling Blessed
Yesterday on my yahoo group for parents with children that have MAE I requested parents to all chime in and say where they are at and what their experience has been so far. I'm still fairly new to the group compared to some people that have been on there for years and thought it would be helpful for all of us to hear other people's stories and share our own. One of the things that is most encouraging when you're in the fire with this is to hear from people that are on the other side of it. Or, even from people that have learned to cope and live with it daily.
I wasn't prepared to read all the responses. There's been a good amount of parents chiming in their stories and I'm so grateful, but it's hard to read the stories sometimes. I've only read about 3/4 of the stories so far, many with tears and understanding and some with awe and a heavy heart.
I say this with some reservation, mostly out of fear of sounding redundant and like a cliche. But, I sit here tonight amazed again at God. I just feel so blessed that we found something to help Hewitt. He was doing so bad. So incredibly bad, we had lost him for weeks at a time, only getting glimpses of "him" for minutes at a time. I really believe that God led us to where we're at. He unsettled my heart with all the meds. He led me to information on diet changes. And, while some people might argue that it was God who made this happen to Hewitt to begin with...I praise Him for giving me my son back. For getting to watch him play on the playground again, walk like a child without a disability, talk and use his imagination, he even remembers what kind of car one of his church teachers drives right down to the color. I have this beautiful, thriving boy. (I have 4 for that matter) And 2 months ago, he was still beautiful, but he was a mess and hurting so badly and I was terrified for his future...and while I still worry about his future, it's a lot easier to deal with today and enjoy what we have right now. And, although we are not 100% seizure free, I think we have found something and when we're diligent enough it seems to be working.
My hearts go out to the families that are dealing with this weeks, months and years without relief, or the ones that might have had a time of seizure freedom and then had their hopes dashed when the beast returned. We might be one of those families someday, but today my prayers and my pleading are for them and all they have to deal with today and my thanks go up for our Hewitt and our miracle.
I wasn't prepared to read all the responses. There's been a good amount of parents chiming in their stories and I'm so grateful, but it's hard to read the stories sometimes. I've only read about 3/4 of the stories so far, many with tears and understanding and some with awe and a heavy heart.
I say this with some reservation, mostly out of fear of sounding redundant and like a cliche. But, I sit here tonight amazed again at God. I just feel so blessed that we found something to help Hewitt. He was doing so bad. So incredibly bad, we had lost him for weeks at a time, only getting glimpses of "him" for minutes at a time. I really believe that God led us to where we're at. He unsettled my heart with all the meds. He led me to information on diet changes. And, while some people might argue that it was God who made this happen to Hewitt to begin with...I praise Him for giving me my son back. For getting to watch him play on the playground again, walk like a child without a disability, talk and use his imagination, he even remembers what kind of car one of his church teachers drives right down to the color. I have this beautiful, thriving boy. (I have 4 for that matter) And 2 months ago, he was still beautiful, but he was a mess and hurting so badly and I was terrified for his future...and while I still worry about his future, it's a lot easier to deal with today and enjoy what we have right now. And, although we are not 100% seizure free, I think we have found something and when we're diligent enough it seems to be working.
My hearts go out to the families that are dealing with this weeks, months and years without relief, or the ones that might have had a time of seizure freedom and then had their hopes dashed when the beast returned. We might be one of those families someday, but today my prayers and my pleading are for them and all they have to deal with today and my thanks go up for our Hewitt and our miracle.
Friday, October 31, 2008
Baby steps
So, things have simmered done slightly around here. The massive screaming, hitting, kicking, biting fits have calmed down a little bit and we are able to do normal things like get dressed in the morning. I feel like I'm able to see what sets him off a little better so I'm doing my best to avoid those confrontations. Although, sometimes it's impossible to avoid them when it's something like Hewitt throwing his couscous all over the kitchen table and floor making a huge disaster and my least favorite thing to clean up - pasta. Some things I just have to put my foot down on. But, it seems like the fits aren't lasting as long and with the threat of losing a toy to the garbage can he usually snaps out of it.
I had a very encouraging moment yesterday as we were driving in the car. We drove by an office that we drive by all the time. About 5 months ago I had an appointment at that office and I brought Hewitt in with me. He was doing really bad at the time, dropping, drooling like crazy and really out of it cognitively. Hayden ended up coming in to help me out because I had Titus with me as well. On our way out we ran into someone in the hallway that had a rat and he got to see it and pet it. Yesterday as we drove by Hewitt said "mommy, do you remember that place we went" and he pointed to the building. "remember how I went there with you, and Daddy came, and we saw the rat?" I know this probably sounds really trivial, but it was such an encouragement to me. At the time it happened I wouldn't have thought he was cognitive enough to even remember it at all. And, now, 5 months later he is pulling it out of his memory somewhere. It was amazing and it completely made my whole afternoon. I love how this diet is giving him enough of a break from all the seizures that his mind is able to work again like it's supposed to. He even did a page out of his preschool workbook this week!
It's little steps, but they're in the right direction.
I had a very encouraging moment yesterday as we were driving in the car. We drove by an office that we drive by all the time. About 5 months ago I had an appointment at that office and I brought Hewitt in with me. He was doing really bad at the time, dropping, drooling like crazy and really out of it cognitively. Hayden ended up coming in to help me out because I had Titus with me as well. On our way out we ran into someone in the hallway that had a rat and he got to see it and pet it. Yesterday as we drove by Hewitt said "mommy, do you remember that place we went" and he pointed to the building. "remember how I went there with you, and Daddy came, and we saw the rat?" I know this probably sounds really trivial, but it was such an encouragement to me. At the time it happened I wouldn't have thought he was cognitive enough to even remember it at all. And, now, 5 months later he is pulling it out of his memory somewhere. It was amazing and it completely made my whole afternoon. I love how this diet is giving him enough of a break from all the seizures that his mind is able to work again like it's supposed to. He even did a page out of his preschool workbook this week!
It's little steps, but they're in the right direction.
Thursday, September 18, 2008
Day 3 and counting!
Another seizure free day! It's getting harder to get him to wear his helmet and scooch on his bottom when he's not wearing it. I want to let him take it off, but it's all still so fresh. He still has a slowly fading black eye he got last week from dropping on the toy box...it just doesn't seem worth it yet. Now that I think about it, wasn't I just wishing for him to care about the helmet a few posts back? God knows our hearts!
Thursday, September 04, 2008
Figuring things out
I strongly believe that God gives us peace about things when we need it...when we need to be okay with our circumstances, or a decision we've made...since this began in March, I have been searching for that peace in many different areas. Our decisions about Dr.'s, medicines, treatments, etc. I have received peace in those areas as we've sought new options, treatment, new Dr.'s and taken him off of some of his meds. One thing I have never had a peace about is the origination of the seizures. There is so much about seizures that the medical field doesn't know yet. There is a large percentage of people that have epilepsy that have no explanation for why. So, although Dr.'s are pathological and pharmacological by training, when it comes to seizures (and i'm sure other things) the only explanation they can give is that there isn't one, and then prescribe us a med to stop them. Maybe if that first med would've fixed everything I never would've questioned any of this. But, it didn't. So, here I am 6 months later, unsettled and looking for answers.
A couple weeks ago I posted a survey on my yahoo group for parents with kids that have Doose. I asked them a lot of questions about what their kids are eating and if they have any external symptoms that they might not have thought to relate to what they're eating. For instance, Hewitt has huge tonsils, sounds nasal (most likely swollen adenoids as well), is constipated a lot and gets eczema when he has a lot of dairy. I've been doing a lot of research and discussion with a friend of mine that knows a lot about the effects of diet on our bodies. A lot of things Hewitt's Dr. has no problem admitting she doesn't know much about because she wasn't trained in it. I got over 20 responses and about 90% of the kids eat a lot of the foods I asked about and have one or more of the symptoms asked about! I was pretty blown away by the results and I'm now researching and praying about what to do with them.
We cut dairy out about a week and a half ago...hadn't seen much change in the 10 or so seizures we were having. Well, today - as I write this at 4:00pm I can say that I've only seen 1 seizure today. ONE! It's amazing. I still want to make sure it's diet, but feel pretty sure that they're related. After a few weeks without dairy, we'll reintroduce it in a small amount and see if it makes a noticeable change.
A couple weeks ago I posted a survey on my yahoo group for parents with kids that have Doose. I asked them a lot of questions about what their kids are eating and if they have any external symptoms that they might not have thought to relate to what they're eating. For instance, Hewitt has huge tonsils, sounds nasal (most likely swollen adenoids as well), is constipated a lot and gets eczema when he has a lot of dairy. I've been doing a lot of research and discussion with a friend of mine that knows a lot about the effects of diet on our bodies. A lot of things Hewitt's Dr. has no problem admitting she doesn't know much about because she wasn't trained in it. I got over 20 responses and about 90% of the kids eat a lot of the foods I asked about and have one or more of the symptoms asked about! I was pretty blown away by the results and I'm now researching and praying about what to do with them.
We cut dairy out about a week and a half ago...hadn't seen much change in the 10 or so seizures we were having. Well, today - as I write this at 4:00pm I can say that I've only seen 1 seizure today. ONE! It's amazing. I still want to make sure it's diet, but feel pretty sure that they're related. After a few weeks without dairy, we'll reintroduce it in a small amount and see if it makes a noticeable change.
Saturday, July 26, 2008
Pink Floyd and Billy Joel
God amazes me. I wish I had a better word then amazes, because I happen to use that when referring to all kinds of things. Like the great wash machine someone gave me that holds a ton of clothes...hardly the same playing field as God. Nonetheless, in my inadequate human terms, He is amazing. When all of this started with Hewitt, He gave me this adrenaline I'd never had before. I didn't really care if I slept, I didn't need or want a break, I just wanted to be near him all the time. I would like to think these are the maternal instincts He created me with. I had just never felt them quite so intensely. But, like anything that repeats itself for so long - I began to grow tired...maybe about a month ago.
I have been asking God for a break, for a reprieve, to lift my heart and soul. I didn't know what that was going to look like, but I was resting in His promise that He gives rest to the weary. (matthew 11:28-30) I had an older, wiser woman once tell me that as a busy mom you have to stop looking for the breaks all the time and trust that God is going to give them to you. He knows the burden we carry and He wants to take it from us. So, last weekend when our friends unexpectedly offered to take the kids I thought this is the break He has been planning. Praise Him! He is good. Friends we feel good leaving Hewitt (and Lincoln and Everett) with. Time away. Time alone. Time with just Titus. (a rarity) God provided physical and mental rest at a wonderful time. My body and mind have felt rejuvenated all week.
But, I'll be honest...as soon as we saw Hewitt again on Monday and saw him dropping and drooling and staring off...my heart was so heavy burdened again. I felt a little embittered at my break. I knew it was good, I knew it was from God, but I still felt so sad. All day long I am restricting him from things that every normal kid should be able to do...it's so exhausting. I feel like I'm withholding childhood from him at times...I carry this guilt, and I can see now, a brokenheart. Sometimes I don't know what to do with my brokenheart. It has come so unexpectedly, and I don't know how to heal it. I can't change what's happened to him and I have to keep doing what I'm doing to keep him safe. Tonight, God gave me something beautiful - and I think the reprieve my heart needed. It was very simple, and it might seem silly. But, we went to this fair with friends in Mountlake Terrace tonight. We sat in this field while live music played and all the boys were up and dancing, except Hewitt. Sometimes I can't even look at him when we're faced with these situations. I want to let him go so badly, but I don't want him to get hurt. We hadn't seen any seizures in a while, so we decided to let him get out of the stroller. We got him out and that little boy danced like I had never seen him dance before. (He was on super soft grass and he didn't have his helmet on.) He danced to Pink Floyd and Billy Joel songs with ladies he didn't know, he boogied all over the place. It brought so much joy to my heart and soul...I couldn't even describe the feeling, just watching him have fun, be a kid and MOVE around without someone holding his hand or anything. I felt like I was radiating within. And with that one little event, God is showing me He will heal my heart. He will lift my soul.
Psalm 147:3 - "he heals the brokenhearted and binds up their wounds."
I have been asking God for a break, for a reprieve, to lift my heart and soul. I didn't know what that was going to look like, but I was resting in His promise that He gives rest to the weary. (matthew 11:28-30) I had an older, wiser woman once tell me that as a busy mom you have to stop looking for the breaks all the time and trust that God is going to give them to you. He knows the burden we carry and He wants to take it from us. So, last weekend when our friends unexpectedly offered to take the kids I thought this is the break He has been planning. Praise Him! He is good. Friends we feel good leaving Hewitt (and Lincoln and Everett) with. Time away. Time alone. Time with just Titus. (a rarity) God provided physical and mental rest at a wonderful time. My body and mind have felt rejuvenated all week.
But, I'll be honest...as soon as we saw Hewitt again on Monday and saw him dropping and drooling and staring off...my heart was so heavy burdened again. I felt a little embittered at my break. I knew it was good, I knew it was from God, but I still felt so sad. All day long I am restricting him from things that every normal kid should be able to do...it's so exhausting. I feel like I'm withholding childhood from him at times...I carry this guilt, and I can see now, a brokenheart. Sometimes I don't know what to do with my brokenheart. It has come so unexpectedly, and I don't know how to heal it. I can't change what's happened to him and I have to keep doing what I'm doing to keep him safe. Tonight, God gave me something beautiful - and I think the reprieve my heart needed. It was very simple, and it might seem silly. But, we went to this fair with friends in Mountlake Terrace tonight. We sat in this field while live music played and all the boys were up and dancing, except Hewitt. Sometimes I can't even look at him when we're faced with these situations. I want to let him go so badly, but I don't want him to get hurt. We hadn't seen any seizures in a while, so we decided to let him get out of the stroller. We got him out and that little boy danced like I had never seen him dance before. (He was on super soft grass and he didn't have his helmet on.) He danced to Pink Floyd and Billy Joel songs with ladies he didn't know, he boogied all over the place. It brought so much joy to my heart and soul...I couldn't even describe the feeling, just watching him have fun, be a kid and MOVE around without someone holding his hand or anything. I felt like I was radiating within. And with that one little event, God is showing me He will heal my heart. He will lift my soul.
Psalm 147:3 - "he heals the brokenhearted and binds up their wounds."
Wednesday, July 02, 2008
Settling In
After these last 3 weeks of intense seizures - mostly drops, I feel like we're starting to settle in to some kind of pattern or normalcy or something. I don't even know what to call it. I don't think I'll ever get used to watching my child randomly space out, fall down, throw things, etc.. I want to fight for him to stop having seizures and stop having side effects from medicine. But, I am no longer crying every day as I watch him. I am no longer letting myself fast forward 2 years to when he'll be starting kindergarten. What I am getting used to is how I need to respond to his seizures and side effects. I know now he needs someone to hold his hand when he is walking around on a hard surface, he needs to wear his helmet on hard surfaces, he has to be harnessed when he's eating at the table, he can't be in a bath without someone within arm's reach, running isn't the same for him. He's very wobbly and can't go as fast as he used to without falling. I can look at him and see what has changed. I can look at those things as temporary effects to what he's enduring everyday. I have to hope that he will get past this. I realize now that for his sake, for his care, for his future...I have to suck it up, stop freaking out and be strong for him. He is 3, there is no one else that can do this for him. And, although I am writing this right now, it doesn't mean that I will be strong everyday. I know I will get distracted by the pain and unfairness of it all and I will get caught up in the unknowns of tomorrow. I will grieve the childhood I dreamt for him. I will feel sorry for myself for having to do this day after day. I know it will happen. Maybe that's a really poor way to look at all of this. But, I would like to think that God is going to change me over a matter of time not, necessarily overnight. He has started already by letting me see where I am weak. I am thankful for that. I feel as though He is lifting my head and helping me to see the positives I couldn't before. (Well, sometimes I could see them, but they didn't seem to outweigh the negatives and so I didn't really care that they existed.) We are no longer frozen in fear and sadness, we are moving forward and we have a great leader.
A Helping Hand
I had a meeting with a social health person a couple weeks ago. I had Hewitt and Titus with me at the meeting and had the opportunity to share with the woman, what we've been going through with Hewitt. She had the opportunity to witness what we've been dealing with (he was having a lot of drops that morning). She was very sweet and about a week later I received a lovely message on my voicemail from her. She said she couldn't get my adorable little boy out of her head and she wanted to do something to help us. She made a referral for a public health nurse to come meet with us. She said the nurse would be available to help us find our way through the system.
So, today we had a public health nurse come to our house. I am so excited that she is now a part of our lives and this mess we're in. I think her services will help us navigate through the many elements that I often don't have time to pursue (or knew they even existed) - the medical system, support groups for our family, disability insurance, getting him into a headstart program, etc..she is available to help us be an advocate for Hewitt. The meeting helped affirm our feelings about our neurologist...that we as parents have a responsibility and if our Dr. isn't willing to listen to our concerns then we need to seek care elsewhere. Her service is provided free of charge and she is available to help us with whatever we need help with! I feel so much better knowing we have one more person in our corner that has dealt with the medical system.
Medically, this hasn't been a great week for Hewitt. His drop seizures have decreased since we decreased the dose of his 3rd med (depakote). But, his absences have increased by a lot. The last couple days have been really frustrating to watch him be so out of it for such a large portion of the day...we continue to struggle knowing when to administer his emergency meds. We are looking forward to seeing a new Dr. on the 21st that will give us a more clear understanding of how to handle these episodes. The nurse today said she would give a call to Children's and try to get us an appointment even sooner. This would be great as we would prefer not to have to go back to the neurologist at Mary Bridge.
Hayden speaks at a camp next week for their Jr. Highers and we will all join him. I hope this will be a great time to just be somewhere else and be distracted by the outdoors, new faces and some time together as a family. We would appreciate your prayers for the week. For Hayden especially that God would just give him a clear mind and that we would be a joy to have along and not a big distraction. We think it's a great ministry opportunity to be there as a family, but sometimes can get so caught up in family that it's hard to reach out! Please pray for a balance regarding that! Thanks again for your prayers, your encouragement and your love! This would be a lonely road to travel alone and we are thankful for the family, old friends, and new ones, that God has provided along the way.
So, today we had a public health nurse come to our house. I am so excited that she is now a part of our lives and this mess we're in. I think her services will help us navigate through the many elements that I often don't have time to pursue (or knew they even existed) - the medical system, support groups for our family, disability insurance, getting him into a headstart program, etc..she is available to help us be an advocate for Hewitt. The meeting helped affirm our feelings about our neurologist...that we as parents have a responsibility and if our Dr. isn't willing to listen to our concerns then we need to seek care elsewhere. Her service is provided free of charge and she is available to help us with whatever we need help with! I feel so much better knowing we have one more person in our corner that has dealt with the medical system.
Medically, this hasn't been a great week for Hewitt. His drop seizures have decreased since we decreased the dose of his 3rd med (depakote). But, his absences have increased by a lot. The last couple days have been really frustrating to watch him be so out of it for such a large portion of the day...we continue to struggle knowing when to administer his emergency meds. We are looking forward to seeing a new Dr. on the 21st that will give us a more clear understanding of how to handle these episodes. The nurse today said she would give a call to Children's and try to get us an appointment even sooner. This would be great as we would prefer not to have to go back to the neurologist at Mary Bridge.
Hayden speaks at a camp next week for their Jr. Highers and we will all join him. I hope this will be a great time to just be somewhere else and be distracted by the outdoors, new faces and some time together as a family. We would appreciate your prayers for the week. For Hayden especially that God would just give him a clear mind and that we would be a joy to have along and not a big distraction. We think it's a great ministry opportunity to be there as a family, but sometimes can get so caught up in family that it's hard to reach out! Please pray for a balance regarding that! Thanks again for your prayers, your encouragement and your love! This would be a lonely road to travel alone and we are thankful for the family, old friends, and new ones, that God has provided along the way.
Wednesday, June 18, 2008
My New Babysitter - the Boon Flair
Today was a better day, largely in part because of the images above!
Much to Hayden's dismay, and rightfully so, I indulged on an expensive highchair for Hewitt. (The dismay being that I charged it to my paypal account ;-)) It may seem like a small thing to be so excited about, but, I finally found a safe solution to meal time with Hewitt. After a lot of researching and waiting for one to come up for sale on ebay, I found him this highchair that accomodates up to 50lbs(he's 40) with a 5-point harness. It has a pneumatic lift, (so much fun) I can raise it up so he could help me at the kitchen counter with something, or down low enough to push up to the table. It has castors and it glides around, and is ultra-modern: all of which makes it a PERFECT FIND. It is so cool that Lincoln and Everett are quite jealous and Lincoln asked if we could please buy two more for them. In case you're wondering why I needed a solution at meal time, I will share a quote from another Doose mommy.
"The dinner table was hard as well, I usually ended up with him sitting on my lap…no one but us could possibly understand how dangerous and difficult a kitchen table and fork could be to a child. "
When your arms jerk up and you are throwing whatever is in your hand, hitting yourself with what is in your hand, dropping forward and hitting your forehead, nose, lip, cheeks...breakfast, lunch and dinner become a little bit dangerous. I had previously been putting him in the armchair, surrounding him with a blanket, putting a pillow on the table in front of him and then a towel over that so he didn't get it all dirty. Even with that, sometimes he still hit his face on the edge of his bowl or plate. I have tried strapping him other ways, but he fights it and I don't blame him. FINALLY, I have one place I can strap him in, walk out of the room and I know he's not going to get hurt. (Unless he hits himself with whatever is in his hand, but there's not a lot I can do about that anyway.) This is a praise. I am ecstatic about it and if he would let me keep him strapped in there all day I just might.
Now if I could just figure out how to keep him safe from the hardwood floor, the edges of his bed, the toilet....one thing at a time.
And, one more praise. Hewitt goes in to get his helmet tomorrow. This could not have come at a better time.
Friday, May 23, 2008
Lover
These are the words of a song called "Lover" by Derek Webb. It's such a beautiful song, go listen to it if you can, I'm sure it's on itunes...it's a few years old. You have to think about some of the words...I love it, and listening to it tonight, it really spoke to my heart. In all my wandering away from Him, He is always there, always pursuing me, always loving me...
Lover
words and music by derek webb
like a man comes to an alter i came into this town with the world upon my shoulders and promises passed down and i went into the water and my father, he was pleased i built it and i’ll tear it down so you will be set free
but i found thieves and salesmen living in my father’s house i know how they got in here and i know how to get ‘em out i’m turning this place over from floor to balcony and then just like these doves and sheep you will be set free
i’ve always been a lover from before i drew a breath some things i loved easy and some i loved to death because love’s no politician, it listens carefully of those who come i can’t lose one, so you will be set free
but go on and take my picture, go on and make me up i’ll still be your defender, you’ll be my missing son and i’ll send out an army just to bring you back to me because regardless of your brother’s lies you will be set free
i am my beloveds and my beloved’s mine so you bring all your history and i’ll bring the bread and wine and we’ll have us a party where all the drinks are on me then as surely as the rising sun you will be set free
Lover
words and music by derek webb
like a man comes to an alter i came into this town with the world upon my shoulders and promises passed down and i went into the water and my father, he was pleased i built it and i’ll tear it down so you will be set free
but i found thieves and salesmen living in my father’s house i know how they got in here and i know how to get ‘em out i’m turning this place over from floor to balcony and then just like these doves and sheep you will be set free
i’ve always been a lover from before i drew a breath some things i loved easy and some i loved to death because love’s no politician, it listens carefully of those who come i can’t lose one, so you will be set free
but go on and take my picture, go on and make me up i’ll still be your defender, you’ll be my missing son and i’ll send out an army just to bring you back to me because regardless of your brother’s lies you will be set free
i am my beloveds and my beloved’s mine so you bring all your history and i’ll bring the bread and wine and we’ll have us a party where all the drinks are on me then as surely as the rising sun you will be set free
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