MyBlueLobsters
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Posts posted by MyBlueLobsters
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Thanks guys So far he's still a mess. This is the first time he's ever had to take meds via mouth....he's had a feeding tube his whole life until recently. So this new by meds medicine taking is new to all of us. DH finally just got him calmed down enough to take his meds and eat by putting him in the bath. I'm praying tomorrow is a better day!
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Can you spend the day cuddled on the couch watching movies?
:grouphug: I will keep you and Logan in my prayers!
I would LOVE it if Logan wanted to spend the whole day cuddled in my arms and watching TV! :lol: But alas, he just screams and pushes us away. We pretty much are catering to his every whim today....thankfully the big boys feel bad for him and are willing to coddle his every wish and demand! ;) Let's just hope he doesn't get used to this!
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I have heard that days 3 and 4 are the worst too. Is he taking his meds-- especially the pain killer. We had friends whose son had to readmit becasue he refused to take his meds. Hang in there dear. I hope you get the desired result from the surgery. :grouphug:
He takes his antibiotics no problem. The pain meds taste AWFUL, so those are a bit more challenging, but he eventually takes them. I am praying we don't have to re-admit! GAK! Thanks for the hugs :001_smile:
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My Logie had his tonsils out on Wednesday. He was doing SO GOOD, even the nurses said that he was doing better than most kids recovering from tonsil surgery. We came home and things were going great. We had heard that days 3 and 4 are the worst, but figured since he was doing so well, maybe we'd dodge that bullet. HOLY CRAP....aparently we didn't! Something happened to my sweet recovering angel overnight and he is just a MESS! He wants up, then he wants down, then he wants a drink, then he throws it across the room, then he wants to eat, then he doesn't, then he wants Mommy, then he wants Daddy...ARUGH! OH, and today is also the day he decided he doesn't like diapers anymore.....he's been taking them off. Most days I'd be THRILLED about that...but today is not that day!
Please tell me, those of you who have been through this, that things get better!!!!
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P.S. any news on the medicine for him?
Thanks for asking. Nope. We thought we had it figured out, but they called back today with another problem....so we are still no further than we were before.
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Logan is on Parenting.com They are featuring kids with Down Syndrome and put Logie on their website (along with tons of other beautiful kids with DS)
http://www.parenting.com/gallery/Baby/A-Special-Joy-16-Babies-With-Down-Syndrome/18
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We mix the PB with bread and made a paste. We've never had one get away HTH
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I have a question...not being at all snarky...this has been convicting me recently.
For all of you who are so against this for being illegal, do you ALWAYS stay at or below the speed limit? Every time your speedomoter rises above the posted speed limit, you are breaking the law by breaking the speed limit. So is your reason for saying this is so wrong is that you think it is a worse illegal offense or that some laws are okay to break and others aren't?
We download off a site that is called "Graboid.com" and they claim it's legal....:confused:
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Thanks for starting this thread! I also have a sweet little boy with DS who has both blessed our family and changed our outlook on so many things. Isaac is 5 years old (how quickly time has flown!). He is #7 of our 8 children. We also did not know he had Downs prior to his birth. We did not take the tests as they would not have changed anything for us. We did have high level ultrasounds done for other reasons but, although he was born with a heart defect, no markers were indicated. The news was a shock at first (I found out alone, at night, after my dh had left to make the hour drive home), yet I have to say knowing that this was something the Lord allowed, and knowing His ways are always good, made the transition to acceptance and than joy a much shorter journey.
Isaac had feeding issues at the start and the initial focus was to resolve those in order to prepare him for open heart surgery, which the doctors said he had to have by 8 weeks as the huge whole in his heart was too big to close on its own. We went in at 5 weeks for a pre-op meeting to find that God had begun to heal that huge whole and surgery would no longer be necessary! When we queried the cardiac doctor, one well respected in his field, concerning his earlier diagnosis, he just smiled and said, “Well, I’ve changed my mind.†He may have changed his mind but it was a miracle that prompted it!
I will tell you that to watch my son struggling for every breath and then to see him made whole with his life before him really put the DS in perspective. To have him alive with DS was far better than to be without him at all.
After that hurdle came other tests, doctor appts., and decisions, all of which felt very overwhelming and even intrusive at first. But they also turned me into a strong advocate for my child. I read and researched everything I could get my hands on. And my dh and I prayed for wisdom and guidance for Isaac and for our family. Before too long we had peace and a new normal (but not so very different from the old normal) that was right for our family.
It has been so good to see life through Isaac’s eyes. He never seems to miss the simple joys we have so often become oblivious to. Yesterday, he was standing on a hillside where the sun cast a long shadow of his body. He began to wave his arms and legs and watch his shadow dance. It brought giggles to his face and a smile to mine. Seeing life through Isaac’s eyes also has helped our family view other people with greater understanding and genuine interest, rather than uncertainty and fear. When we are out and about, we truly enjoy the opportunity to interact with those with special needs and to encourage those who love and care for them. My dd, almost 14, has said that if Isaac is not able to live independently when he is older, she wants him to live with her. In fact, she’d like to have a home big enough to have mini-apartments for people with DS.
Now that’s not too say the sunshine doesn’t get clouded over sometimes. In many ways, Isaac is just like any other little boy. He can and does drive any or all of his seven siblings crazy at times. Like when he feels the need to completely dismantle one of their rooms and experience the thrill of watching things fly through the room. His brothers and sisters do love him for who he is but they do get plenty of chances to exercise mercy and grace…or not. But than all is not peace and harmony with them day in and day out either.
I have hopes and dreams for Isaac just as I do for all my children. I hope with all my heart he will continue to be a reflection and reminder of God’s amazing love for all of us. I hope he will be able independently or semi-independently. I hope he will be able to enjoy the fruits of his labor in a job suited to him. If the Lord wills it, I hope he will be able to share his love with a special someone one day. But with all these hopes, I also remember what a wise woman said back at the beginning of this journey: “So you might have a child who wants to be with you and love you forever -- how bad is that?†Not bad at all.
Melissa asked Kim about schooling and resources. I can speak a little to that. For us, we are continuing to home school Isaac using a neurodevelopment program that addresses and integrates all of his needs. We see his ND every four months and she puts together a program which we (try) do with him each day. My dc and I divide up the activities and take turns working/playing with him throughout the day. We have seen wonderful growth over time with speech, motor skills, sensory issues, processing, etc…At the moment he can read about 200 words on flashcards and is just starting the Dick and Jane readers. He knows all his abc’s and can count to 16 on his own. Kids with DS do learn, just more slowly and through slightly different means. As an example, with my other dc we’ve focused on phonics over sight reading. With Isaac, sight reading comes first; his visual memory is better than his audio memory. So we make use of his strengths while working on his weaker areas. To date, we haven’t used individual specialists with Isaac, though we will if the need arises.
As far as resources, there are lots of them out there. When Isaac was just a baby I found Woodbine House books and they have been very helpful, along with others. I scoured the internet for information. I joined email lists geared toward DS with various foci such nutrition, development, alternative medicine, home schooling, research, etc…and these have proven very helpful. Through them I’ve learned lots from the real specialists - moms in the trenches who have gone before me. They’ve also been a great help in knowing what to look for and where to go when I’ve needed to see doctors or other professionals.
So life is different and in some ways harder that it was before Isaac, but we are so much deeper in character and broader in love for his coming. Thanks for celebrating Down Syndrome Awareness Month with us - there is much to celebrate!
Blessings,
Sandy
Thanks so much for your post! You are far more eloquent with your words than I am. Your Isaac sounds just amazing! Thanks for sharing about him! Oh and a side note, Woodbine house published a book that a sory I wrote was in. The book is called "Gifts", have you heard of it?
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I have a question or two, if you don't mind.
What do you envision Logan's life to be like? Do you see him being somewhat independent into adulthood?
Does he have issues with normal sleep cycles and such? (I wonder if you get enough rest, dear)
As far as learning/schooling goes, what are you planning on doing with him regarding teaching? Will he be capable of the usual things only at a slower pace perhaps? Do you have plenty of resources for working with him in this way? How do you find those resources?
It is hard to envision much for the fact that we don't know how severe his mental delays will be. I would love for him to be semi-indepandant. Maybe live in an apartment with a few other delayed friends and have us moms check in daily. However, if he is with us forever, that is great too. In fact my middle son has already announced that he is not getting married and will just take Logan to live with him :001_smile:
As far as sleep, it is much better. It will even get better when he gets his tonsils out and no longer has apnea. Last year when his health was so bad, I rarely slept. Both DH and I had to get up every hour to test his blood sugar to make sure he didn't seize and die in the night. I am glad that season of our life is over!
I have NO idea what to expect for schooling. It is starting to make me anxious because I have no idea what to expect. I know he will do fine though :001_smile: As far as resources, we have a large homeschool conference come each year and they have a sub conference for teaching kids with disibilites. I will be attending that this next year to start getting ideas, I can't believe he'll be 4....YIKES! :tongue_smilie:
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I would love to tell you that God miraculously healed her and that she and her baby and her loving husband lived happily ever after. But I am even happier to tell you what really happened. In the final weeks of her life God worked a miracle...he called Christy's soul to Him and she accepted the gift of salvation.
Both my DH and I were in tears over this beautiful quote. I am so sorry that she passed away, but so glad she is with our Saviour. :grouphug:
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I'm so happy for you that you are blessed with Logan, as well as your other children. You obviously love them all very much and deserve the happiness they will surely bring you.
My first son, Jack, had DS. He was an amazing character, so full of mischief. He certainly could be the epitome of happiness and also sometimes tragically sad. He brought us a lot of joy and probably an equal measure of despair at times. He was always loving, and always loved but there is no denying that he was very difficult to cope with sometimes, especially as over the years his four younger brothers and sisters came along.
He died three years ago, not long before he was 14 years old and I miss him every day. The time we had with Jack was so precious, I wish with all my heart it could have been longer.
I know I don't need to tell you, treasure every moment with your darlings.
:crying: Thanks for sharing about your Jack. I am so sorry for your loss I can't imagine losing Logan, or any child for that matter. :grouphug:
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Hug that little guy - my DD is off hers right now and i cry at night about it. We have no insurance.....
:grouphug: I was totally insensitive earlier....I should have given you MAJOR hugs then! :grouphug:
Does she take HGH for the same reason? We went for almost a year putting Logan to bed praying over him each night that he would be with us in the morning. That is a feeling no parent should ever have to go through. :grouphug::grouphug::grouphug: Major hugs to you and your little girl.
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I will go visit them (the endocrine Dr) on Monday if we have not heard anything. I have another appt there anyway.....
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Don't you have a coordinator at the drug company? Get on the phone with him/her (I had one at Lily).
That is that persons job - they run the interference between you, the insurance company and the pharmacy.
If it's Lily that you us - i can give you my reps number to get to the office to maybe get the right person.
Hug that little guy - my DD is off hers right now and i cry at night about it. We have no insurance.....
That is who DH talked to today who said we needed to call the Dr....apparently they can't get the Dr to call them back either.
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So the short story is that Logan has a severe growth hormone deficiency and has to take daily injections or he will die due to a severe hypoglycemic reaction (his blood sugar was dropping below 20 and he was having grand mal seizures and going unconcious). Becuase of his age, it was like pulling TEETH to get our insurance to cover it ($20,000 per year) because they thought we wanted to make him taller....:confused: Anyway, it took 9 months of calls and letters to get this medicine approved and we have now been getting it for 3 months. We get a call today from the company who the growth hormones are from and they say "We are not shipping your next dose because we need medical proof that he needs this" DH told them that this has already been established and if he doesn't get these shots, he dies. They don't care, they 'can't go against their policy', so he calls the Dr's office who we have been trying to contact for a month to get the dosage changed, and his Dr's office is unwilling to call us back. So what the flip are we supposed to do?! DH is calling them back tomorrow saying that if their unwillingness to return our phone calls causes our son to die we will sue their hineys off. Hopefully that will get their rears in gear. We hate to threaten that.....but SERIOUSLY! This is a child's LIFE on the line......ARUGH.
Okay rant over.....off to cry. This is why I'm so fat....... :crying:
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I love the Logan story. I was sitting right here at this desk when I got the call that he was born!
I have a picture of you and your girls here holding Logan when he was just a few days old! Awwwwww lol
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You might could help us by sharing any misconceptions you had about DS children before and how it's changed now...
Thanks!!
Tara
Well, having heard several grown people with DS speak, I was pleasantly
suprised at how far people with DS have come. Not in the far distant past, if you had a child with DS you were encouraged to just put them in an institution where they could never thrive. Now with all the therapies and resources available, people with DS are living longer, becoming more independant, heck, there was even a couple who got married, both had DS. I would have NEVER known or guessed it. I know not all people with DS will be that advanced, but the possibilites are there. I hate to admit this, but I always had 'fear' of sorts being around people with disibilites, I never knew what to say or do or what they could understand. Having had Logan and being around lots of people with DS, I have learned, and as funny as this sounds, to just treat them like people. Don't know why I didn't just do that before! :001_smile:
Another funny misconception is that "People with DS are just happy all the time" which is SO funny....because Logan has got a temper on him the size of Texas! ;) Yes, he generally is happy, but I laugh when people say that 'he just must be happy all the time'.....they should come over for a day! :001_smile:
I assume you didn't have an ultrasound or they didn't see anything when they did as you said you were taken off guard at his birth? You said to ask anything-- would an ultra sound have changed anything for you and your dh? I ask not to put you on the spot, but we know a family who does not have ultrasounds and their last baby was born with DS. They are experiencing the same blessing as you, and they say it would not have made any difference to them. Just curious if you feel the same.
We chose not to have any prenatal testing with any of our pregnancies. I can honestly say nothing would have changed for us. If I were to become pregnant again, I might do testing, but just to be prepared in the event that there was a heart issue or something. In some ways I wish I would have known before, just to be mentally prepared (but I don't think you can fully be prepared for that anyway) and so I could tell people that yes I knew and chose to have him anyway....but on the other hand I am glad I didn't know, becuase then I probably would have worried myself sick with all the things that could have gone wrong. Thank you for asking :)
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Thank you so much for this story.
My father-in-law died last night, and I am so much more painfully aware today about how fragile our lives are, and what a gift each life is. Thank you.
I'm so sorry for your loss :grouphug::grouphug:
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:lol:MMMmmmm, pass over the whipped cream! :lol:
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I just wanted to take a moment and tell you a little more about our story with Logan. I didn't know much of anything about Down Syndrome before Logan was born and have learned SO much in the last 3.5 years.
I was 26 when Logan was born and we did not know before he was born that he was going to have Down Syndrome. Logan was also born with a cleft palate. The Dr told us within a few minutes that he suspected that Logan had DS. I felt as if I had been punched in the stomach. I was so fearful of the 'unknown'. So many thing ran through my head that night and I was just so upset. I remember crying a lot and just wishing that God had given us a 'normal' child. I remember feeling scared that my husband would be angry with me (having a 3rd child was my idea) and wondering what would happen to our marriage. I remember later that night when my husband and I finally were alone (Logan wasn't able to be in our room) I asked my husband what he was feeling and his response was simple, but totally put me at ease, he said "I am just amazed about how much at peace I am about this" From that moment I knew that we were going to be okay, our lives weren't over...a new chapter had just began. My husband and I talked all night and just meditated on Psalm 139. Those verses took on a whole new meaning for me that night. God had knit Logan together this way FOR us, for our family. Logan was 'fearfully and wonderfully made' just like my other boys were. Just because Logan was 'different' didn't make him any less a gift from God.
Fast forward to now. Well, our lives have changed. We are different, God has used Logan to teach us many things. Todd (my DH) and I have grown so much closer since he's been born, we have grown closer to our other boys too. Zach and Aiden have so much patience, far more than I ever had as a child. Watching them with the Logan brings us so much happiness. Our priorities have changed, we have learned to slow down and just enjoy things differently than we would have in the past. A few weeks after he was born, I talked to a mom who had a grown son with DS and she said to me "Emily, if you love this little one unconditionally, and let him love you in return unconditionally, you will expierence a love few ever encounter" At the time I didn't know what she meant, but I am starting to learn what she was talking about. I could go on and on about what we have learned, but for time reasons, I will stop talking.
Anyway, so October is DS awareness month...if anyone has any questions (no matter what they are) feel free to ask. I will do my best to answer them. Thanks for listening! :grouphug:
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Well, you take what you can get! We do chat up a storm on the treadmill, so it doesn't feel so torturous.
And now we have entered this Fat Buster contest, so we have motivation. We don't want the homeschool mom team to be in last place!
Oooo that doesn't sound so bad :) Good luck with the contest!
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Well, that just sucks. I'm sorry.
:iagree::grouphug:
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He was slightly feverish on Tuesday night, after Swim and Gym, so I kept him from scouts. He was not feverish yesterday, but whiney so I kept him home from church. The snot is clear, there is a moderate amount of it. (Though with all of his snorting and his sorry noseblowing skills he makes it seem like there is more!:lol:)
I think he sounds fine....usually clear snot is no biggie! Have fun.....however, if I had some free time I would go get a drink and an appitizer somewhere, NOT work out! :lol:
hamster on the loose----what to do?
in General Education Discussion Board
Posted
Cover up your sump pump hole! My friends dd lost her hampster and they found it floating in the sump pump hole (it was looking for water) You might want to put a dish with some water out too.....good luck!