I am so happy I just had to share!!! UPDATE PG2 POST 17!!!!!

[cancer_survivor_06]

I don't visit here very much but I need to share this w/ others who could really understand. Lily was diagnosed 4.5 yrs ago w/ septo optic dysplasia which has left her unable to walk, talk, eat and do numerous things the jist of it is that she has low tone and due to lack of oxygen she has basically had poor neuron growth in the brain. She recently turned 5 and our baby food bill has just been increasing considerably. She does PT OT and ST and they have helped but she pretty much does things when she is ready. As far as her speech goes verbally her communication cosists of momma, up, oooh, uh oh, and mmmm. One of the first days of her intense pt the pts dh brought her food from a local bbq place and as soon as he came in and the smell did she was saying mmm and this has been happening more and more frequently when we go out to eat. She has just started eating the gerber crunchies similar to cheese puffs but she will not eat the little fruit stars and a few small things here and there. Tuesday we went to eat and restaurant at the clubhouse in our subdivision and one of the things they had was baked fish in a buttery sauce w/ crawfish tails well low and behold she ate a whole piece of fish it was soft so I really wasn't surprised but the thing I am most excited about is that tonight I fixed a box of hamburger helper b/c its just me and Lily (dh is overseas right now and Juliette is staying at meme's) so I knew this was something easy to fix and I heated up a gerber graduates ravioli thingy for lily I sat next to her w/ my food and hers to feed her and the ravioli's were a first time thing for her well she didn't want them but she ate every bit of the hamburger helper that was on my plate. I am so excited that she is tryin new things and hopefully soon we can be completely done w/ baby food I am just so excited I can't wait till dh calls so I can tell him. Now if I can get her off of a bottle and on to a cup I will be in heaven. '

Sorry this is so long and if you made it this far thanks for reading.

 

[OneLittleSpark]

Congratulations!!!

That's wonderful news!! You must be so proud of her! Big congratulations and hugs to all of you, this is a HUGE milestone and you have every reason to celebrate

 

[SandrainNC]

That is wonderful!!!!!!!!!

Sandra

 

[sdarwkcabemanmy]

Congrats!


Honestly, I don't know how people like you do it..you are just amazing. You have to be so strong to deal with a kid like yours and I don't know that, if placed in the same situation, I could do it with as much joy and enthusiasm as you do. I struggle SO much with DS and his little problems but in the grand scheme of things, his problems are teeny compared to what others have to deal with.

 

[alizesmom]

That is great to hear, every step our kids take is a miracle. Karen

 

[alizesmom]

I struggle SO much with DS and his little problems but in the grand scheme of things, his problems are teeny compared to what others have to deal with.

We all have struggles and each one is real. Rating it against that of another person just doesn't help. Your son's issues matter. Karen

 

[lucigo]

Congrats!!! Sounds like a giant step, you must be SO proud of her!!!

 

[KirstenB]

Congratulations!!! I sometimes cook meals in the crockpot, and they go over well in our house, as does Hamburger Helper. I hope Lily continues to expand her foods!!

 

[SereneOne]

That is SO WONDERFUL!! Thank you so much for sharing.

 

[cancer_survivor_06]

Thanks everyone I am so excited we have so many battles/tasks that we go through everyday and my head wants to keep telling me certain things will never happen potty training (now this accomplishment will be a mega celebration), speaking verbally, walking and my list can go on. She picks up things really quickly and for the most part she understands more than we think she does but then somethings I just can't figure out why her brain can't give her that input she needs i.e. saying the things she does but other words and sounds she she can't/doesn't. Then I take a minute stop and think she will get to it when she is ready just like everything else she has done like sign language she is basically learning a word a week and she can use them appropriately and some on command so I know that one day she will be able to tell me what she is thinking. I guess in the back of my mind we were always going to be doing the baby food thing just b/c of her sensory issues but she has proven that is not so. I truely can not wait till we go to disney in december this will be her first trip actually eating some food in disney. My heart will not allow my head to think that she can't do anything (i guess that's the optimist in me) and so it gives me great join to see her do the things I know she can and someday will do especially b/c dh is very much you need to face reality that she may never do these so it also gives me great pleasure to say she did it (you would think he would have learned by now.

Congrats!


Honestly, I don't know how people like you do it..you are just amazing. You have to be so strong to deal with a kid like yours and I don't know that, if placed in the same situation, I could do it with as much joy and enthusiasm as you do. I struggle SO much with DS and his little problems but in the grand scheme of things, his problems are teeny compared to what others have to deal with.

Thank you. Truth be told Lily's battles are teeny compared to others as well. My family thinks I am crazy b/c most of time when they are stressing or annoyed w/ work or whatever I always remind them to not complain b/c it could be worse. I guess b/c I truely feel this way or maybe use this as my escape goat some days everyone has their own battles and everyone's battle is important to its person.

 

[sdarwkcabemanmy]

My family thinks I am crazy b/c most of time when they are stressing or annoyed w/ work or whatever I always remind them to not complain b/c it could be worse.

That's what I tell my parents, too. It could be worse. I like to think that the Goddess doesn't give me more than I can handle. I just wish She didn't trust me so much.

Sometimes I wonder if I have a child w/special needs because there are things I need to learn from this experience beyond what you might normally learn as a parent. I think that everything in life happens for a reason and there is almost ALWAYS a lesson in it, whether we're looking for it or not.

 

[lucigo]

That's what I tell my parents, too. It could be worse. I like to think that the Goddess doesn't give me more than I can handle. I just wish She didn't trust me so much.

Sometimes I wonder if I have a child w/special needs because there are things I need to learn from this experience beyond what you might normally learn as a parent. I think that everything in life happens for a reason and there is almost ALWAYS a lesson in it, whether we're looking for it or not.

I completely agree with you. I have to share something with you. In 1998 I lost a baby, and then in 2000 my husband died. After that I spent a year grieving, and then another year basically on vacation from "real" life. I had bought a house I could comfortably afford, we had use of our neighbors in-ground pool anytime we wanted, and I was working at home very part time and just enjoying my 3 kids. One day while I was lounging by the pool watching my kids enjoy themselves I had a conversation with the voice in my head that basically said this is only a season....it will get complicated again, but you still have things to learn.

Less than a year later I met my now husband and we made our little autistic boy. I can't even put into words how much my soul has grown from the experience of raising such an incredible little person. Do I have my hands full? YES! but I would rather have them full then empty

 

[mechurchlady]

Congratulations

I have tried baby food and it is not that great. Your kid is smart enough to know what the good stuff is. Just let her smell your food and look at hers, lol, she will go for the good real food any time.

For me at age 51 next week, I still enjoy my little steps and improvements. I promise you that there will be many little steps to come. Wow that was a really big step. Congratulations.

From the movie Under the Tuscan Sun is a story. We chase butterflies until we finally lay on the grass for a nap. We awake covered in butterflies.

Big hugs
Laurie

 

[OneLittleSpark]

My heart will not allow my head to think that she can't do anything (i guess that's the optimist in me) and so it gives me great join to see her do the things I know she can and someday will do especially b/c dh is very much you need to face reality that she may never do these so it also gives me great pleasure to say she did it (you would think he would have learned by now.

That sounds like a great attitude to have! Optimism will help to keep a Sun in your heart, even when things are rather grotty and cloudy; believe in your daughter and she will surpass all your expectations !

Do I have my hands full? YES! but I would rather have them full then empty

This sentiment is so beautiful! Thank you for sharing this viewpoint with us, it is so true, and good to be reminded of it sometimes !

 

[ireland_nicole]

Your Lily needs someone to believe in her unlimited potential. Only God knows what she can accomplish. I'm so glad she has a mom like you to challenge and champion her. 6 years ago we were told that we had miscarried our baby; well, our son was born 6 months later. DS couldn't even lift his head at 18 months, and we were told by the neuros all the things he wouldn't do. At 6 he's running and climbing and the joy of my heart. He still has many challenges, but I'm completely amazed at what he can do. I'm not saying all kids will do this, just that Dr's don't know everything.

Do I have my hands full? YES! but I would rather have them full then empty

O.K., I'm crying now, I'll send you the bills for the tissues. Some days are soooooooooo hard. I so appreciate you giving me a little much needed perspective today. BTW, I'm gonna put that up on my wall. I so need to be reminded of that every day. Thanks

 

[cancer_survivor_06]

I am currently using an old laptop since the cord on mine went out so as soon as it gets here I have some great pics to share. I am so proud of her even though she has been a fussy bug here lately.

 

[cancer_survivor_06]

Okay today has been even better she drank an entire drink from a sippy cup w/out even throwing the cup. After buying every cup know to man she finally decide to drink from one of those throw away cups that has the princesses on it the funny thing is I have tried that type of cup before w/ ariel on it I guess she liked the pink better than the blue. So from now on she is only getting a sippy cup hopefully the transition is a smooth one. Wow I am so excited I really didn't think she would drink from a cup for a good bit longer.

 

[mechurchlady]

Congratulations on your milestone. Today sippy cups and tomorrow who knows maybe tumblers.

 

[ireland_nicole]

WooHoo That really is something to celebrate. It sounds like she's developing like DS. He would seem to just stagnate or even regress a little, we'd get a "little" discouraged and then, BAM he would leap ahead. So enjoy the ride mom, and congrats on ya'lls new achievement.

 

[sdarwkcabemanmy]

Alright!
Maybe she didn't like the 'hard' sippy cups? I know sometimes kids are very particular about those. We could never use the disposable ones with DS because he is a chewer and they'd be destroyed in no time.

We've actually been able to find some that don't have a spout on it that he likes a lot and we LOVE them because they don't have spouts for him to chew on which get nasty looking very fast.