Monday, March 31, 2008
Prayers for Janie
I just saw on the WAFB website that Janie Distefano was found dead. Please continue prayers for her and her family and friends. My heart goes out to them all.
Big Eater
Continuing to be mysterious...Lydia downed a whole 25 oz. yesterday...eating 4 oz at almost every feeding!!! I won't try to figure her out...I'll just be glad that she's had such an appetite.
We had great fun yesterday hanging out with the Devillier bunch! Thanks for inviting us...the girls and I had a great time!
For those that don't read the comments posted by others...please read this from Allison Kirkland and please keep "Janie" in your prayers:
Could you please ask all the spiritual people who read your blog to add a special prayer for Janaver (Janie) Distefano who has been missing for one day. SHe is a very close friend of our family and we hope they find her safe! She has been missing since 12 noon in Marksville, LA. She is on the news on channel 9. This has hit too close to home. I have been knowing her all of my life! She is one of the sweetest ladies you could ever know. When I was growing up, she was just a sweet person and cared about my sister and I so much. She has no children. THANKS! - Any prayers would help! Sometimes we don't understand why things happen.. This is definetly a time! Love, Allison Kirkland
We had great fun yesterday hanging out with the Devillier bunch! Thanks for inviting us...the girls and I had a great time!
For those that don't read the comments posted by others...please read this from Allison Kirkland and please keep "Janie" in your prayers:
Could you please ask all the spiritual people who read your blog to add a special prayer for Janaver (Janie) Distefano who has been missing for one day. SHe is a very close friend of our family and we hope they find her safe! She has been missing since 12 noon in Marksville, LA. She is on the news on channel 9. This has hit too close to home. I have been knowing her all of my life! She is one of the sweetest ladies you could ever know. When I was growing up, she was just a sweet person and cared about my sister and I so much. She has no children. THANKS! - Any prayers would help! Sometimes we don't understand why things happen.. This is definetly a time! Love, Allison Kirkland
Saturday, March 29, 2008
Once Again...
I knew that God would lead us to a decision about the feeding tube..I believe he has. Beginning last night, Lydia is starting her decline in appetite again. I have still mostly been able to get her to put the food down, but she is trying to refuse. This time, there is no excuse...no reason to explain her decrease in appetite. I feel solid about the decision to get the button (g-tube). (For now anyway:) All of the practical things involved in caring for the tube will come later...I'll learn all that I need to learn about it, but it will not influence my decision to get it or not. If she needs it, we going to get it. Plans are still the same, though...pharyngogram 4/9...follow-up with Dr Alberty 4/11...then appt with surgeon.
A little reflection:
I've received much praise from family and friends about how I am dealing with all of this...it is very hard for me to accept those kinds of compliments..or any. But, I can kind of relate to what you're thinking. In the past, I remember looking at parents of children with special needs and seeing them as sort of "set apart" from the rest...saintly, even Godly people. Now that I have children of my own with special needs, my thoughts have changed...we're all just regular people. We just lean on God to give us the tools we need to face the challenges that lie before us...and He always comes through...it is easy to see His blessings on a daily basis. My lowest times are probably when I think back to my pregnancy with Lydia and how I just imagined life with her to be so much easier than with Elise...no worries about if and how fast she would develop...just smooth sailing. I now know, of course, that that is not the case. Then I sometimes look at other people with multiple children (like shows on TV: Jon and Kate + 8...and Kids by the Dozen) and I think...how can people have sooo many children and all of them be perfectly healthy? When I start to have these kinds of feelings, I just have to lean on God and remind myself what I know to be true: He chose us for Lydia and Elise and Audrey. He saw something in us that we may not have seen in ourselves. We may not know now His masterful plan, but we have faith that it will be revealed to us...and I pray that we will be all that He has planned for us to be. I am so thankful for your continued prayers for me and our family. I have felt God's loving hand upon us through many of our challenges...I see changes in myself from just maybe a few weeks ago...less overwhelmed less overburdened...just one minute at a time...I attribute a lot of that to your prayers for me. Thank you!
A little reflection:
I've received much praise from family and friends about how I am dealing with all of this...it is very hard for me to accept those kinds of compliments..or any. But, I can kind of relate to what you're thinking. In the past, I remember looking at parents of children with special needs and seeing them as sort of "set apart" from the rest...saintly, even Godly people. Now that I have children of my own with special needs, my thoughts have changed...we're all just regular people. We just lean on God to give us the tools we need to face the challenges that lie before us...and He always comes through...it is easy to see His blessings on a daily basis. My lowest times are probably when I think back to my pregnancy with Lydia and how I just imagined life with her to be so much easier than with Elise...no worries about if and how fast she would develop...just smooth sailing. I now know, of course, that that is not the case. Then I sometimes look at other people with multiple children (like shows on TV: Jon and Kate + 8...and Kids by the Dozen) and I think...how can people have sooo many children and all of them be perfectly healthy? When I start to have these kinds of feelings, I just have to lean on God and remind myself what I know to be true: He chose us for Lydia and Elise and Audrey. He saw something in us that we may not have seen in ourselves. We may not know now His masterful plan, but we have faith that it will be revealed to us...and I pray that we will be all that He has planned for us to be. I am so thankful for your continued prayers for me and our family. I have felt God's loving hand upon us through many of our challenges...I see changes in myself from just maybe a few weeks ago...less overwhelmed less overburdened...just one minute at a time...I attribute a lot of that to your prayers for me. Thank you!
Friday, March 28, 2008
Dr Appt Today
We saw Dr Wood this morning for our surgery follow-up and for Elise's ear infection follow-up. Both went well...ears are fine...incision is fine. Dr Wood immediately said how good it looked as soon as he removed the bandage...good thing...I was a little surprised by it. I'm not sure what I was expecting, but it made me feel bad for Lydia all over again when I saw it. It looks a lot longer and more traumatic than what I expected...I knew it was about 1 1/2 inches, but I'm not a very good estimator...so it looked really long to me. I guess, like Martin said, her leg is so short that 1 1/2 inches is just about her whole thigh...so it is like looking at about 8-10 inches of our thigh. Anyway, I was glad that Dr Wood thought it looked good. He told us to treat it with neosporin for a few days and keep a butterfly bandage on it...Audrey said, "or we could put a heart bandage.." Such innocence! :) We've had another good day today...Lydia taking at least 3 oz at every feeding...spoon feeding pretty well too. I talked to Dr Wood this morning about our possibility of a feeding tube. He said, "Well we knew from the beginning that that would probably be inevitable." I was a little surprised at that...I never knew that it would be inevitable...but it is looking that way now anyway. According to her chart at Dr Wood's office, she gained 4 oz in the past 24 days...considering that Dr Alberty wants her to gain 1/2 oz per day, she is considerably below the mark. He agreed that we don't need to rush into it right now since she is eating well...but, if and when she has another dip, we should go ahead and do it. A part of me just feels like all of her dips have been explainable...reflux, weaning from ACTH, recovering from procedure...but, I guess if every problem that she has causes her appetite to decrease...and we expect multiple problems, it doesn't matter if there is a reason for the lack of appetite...we still need her to eat. I think they are most concerned with these first 2 years or so of her life...to ensure maximum brain growth and development. He said that we can watch for the next 2-3 weeks to see how she does to know for sure that she will continue to eat well. I think that is a good plan.
Have a great weekend!
Have a great weekend!
Thursday, March 27, 2008
Girls' Day In
It's been a fun and laid back day...Martin is away on a fishing trip until tomorrow. The girls and I had a good day together. We all went to therapy this morning...Lydia saw Susan (PT)...Elise saw Laura (OT)... and Audrey spent some time with Terry's daughter...it worked out great! Susan saw some good things with Lydia today, though she was on the verge of sleep the whole time. Susan says that Lydia just shuts down...she's not really tired...what a smart little cookie she is! I always find it uplifting to go to therapy with my girls...I was telling Susan today...I find that therapists are so positive, and doctors are so negative. I guess it's just the nature of their jobs, but I usually leave therapy visits feeling proud of what my girls are doing, and I usually leave dr visits feeling a little sad about what they are not doing.
Lydia has continued to be a little piglet today...yeah! You won't believe this....she took 7 oz before bed last night...that's right....I said 7! Today she has taken a minimum of 3 oz at every feeding...she even did a little better with her spoon feeding today. Thank you all for the wisdom and practical advice that you've shared about the feeding tube decision...I believe as you have told me...God will be our guide...He will lead us to the right decision...and lucky for us, God doesn't make mistakes.
I am just feeling so blessed today! We really had some good bonding time today...Audrey is really into singing and what I call- liturgical dancing lately. It is a real treat. She really gets into it. We all, including Lydia, love to watch her sing and perform. Audrey is also helping lately to calm Elise's "terrible two" fits. I know her frustration is heightened by her speech difficulties, but sometimes it's hard to remain patient. Of course, sometimes Audrey also induces some of those fits...that's just how it goes with sisters, I guess.
I feel like I'm rambling...as if I haven't done that before. :) Thank you God for all the blessings in my life and God bless you all who are connected to us through your love and prayers for Lydia and our family.
Lydia has continued to be a little piglet today...yeah! You won't believe this....she took 7 oz before bed last night...that's right....I said 7! Today she has taken a minimum of 3 oz at every feeding...she even did a little better with her spoon feeding today. Thank you all for the wisdom and practical advice that you've shared about the feeding tube decision...I believe as you have told me...God will be our guide...He will lead us to the right decision...and lucky for us, God doesn't make mistakes.
I am just feeling so blessed today! We really had some good bonding time today...Audrey is really into singing and what I call- liturgical dancing lately. It is a real treat. She really gets into it. We all, including Lydia, love to watch her sing and perform. Audrey is also helping lately to calm Elise's "terrible two" fits. I know her frustration is heightened by her speech difficulties, but sometimes it's hard to remain patient. Of course, sometimes Audrey also induces some of those fits...that's just how it goes with sisters, I guess.
I feel like I'm rambling...as if I haven't done that before. :) Thank you God for all the blessings in my life and God bless you all who are connected to us through your love and prayers for Lydia and our family.
Wednesday, March 26, 2008
Tuesday, March 25, 2008
Latest Feeding News
Lydia had her VCUG yesterday...went fine. Probably a couple of days before results, but the physician's assistant said that she didn't see anything alarming...we pray she is correct.
I talked to Dr Alberty yesterday...told him that we were in much need of guidance regarding the issue of the feeding tube. Gave him the facts: Lydia lost 2 1/2 oz last week...gained 1 ounce the next two days. He agreed that we probably shouldn't continue to explain away Lydia's variability in feeding. He recommended that we go ahead and get the G tube...it would relieve any problems getting her to eat on a regular basis...she would still continue to eat as usual...we would just suplement what she doesn't eat by using the tube. He also explained that it can be permanent, but it doesn't have to be. If she gets a g-tube, then starts to eat well on her own for 6 mos. or so, we can just take it out. It was obvious that it was weighing heavily on me, I think...he said, "Y'all really don't need to be agonizing over this...kids get G-tubes all the time...it's not like we're removing a limb..." I sort of laughed...but, he did acknowledge that there is an emotional issue involved too. He thought it was more of acknowledging that "there is really something wrong with my child if I have to do this." I explained that we've had that understanding for quite some time...it's not that. I just don't want to put her through something (and all of us) that may end up being unnecessary.
But....during our conversation, we also talked about Lydia's reflux...he asked if we felt that was resolved...I told him that I don't think that her feeding problems are related to reflux anymore.. He said that either the Prevacid is working...or maybe that she has just outgrown the reflux (which tends to happen in most typical kids around Lydia's age). I told him about her gagging and gasping episodes that she does sometimes when she eats but mostly when she takes medicine. I also told him about an email I had gotten from a mother of a child with Rett syndrome & mitochondrial dysfunction...who talked about the coordination of nose breathing being a problem. The problem of nose breathing coordination is that a person can suck and breathe through their nose at the same time with no problem....swallowing and breathing through the nose is a different story...it can not be done simultaneously....it has to be alternated. That presents a problem for some kids with mito issues. I've started to think that this may be Lydia's problem when she gags and gasps. That lead him to think that we need to repeat the pharyngogram (swallow study). We did one when Lydia was about 6-8 weeks old...results were fine, but we haven't done one since. The plan is this: pharyngogram scheduled for April 9th...follow-up with Dr Alberty April 11th with a plan to schedule an appt with a surgeon for the G tube.
In the meantime.....Lydia took 5 oz last night, then slept all night for the first time since her biopsy...she has taken at least 3 oz at every feeding so far today....4 oz at her last feeding. I guess she plans to keep us guessing!! These feeding habits lead me to believe that maybe she doesn't really need a feeding tube, but I've seen her appetite pick up like this before...then decline again. At least we'll have a few weeks to observe her feeding before actually inserting the tube...that may lend some pertinent information...to let us know that we are making the right decision or to let us know that we need to change our minds again. I'll continue to lean on the Lord to guide us to the right decision and to ask Him to be with Lydia through it all.
I talked to Dr Alberty yesterday...told him that we were in much need of guidance regarding the issue of the feeding tube. Gave him the facts: Lydia lost 2 1/2 oz last week...gained 1 ounce the next two days. He agreed that we probably shouldn't continue to explain away Lydia's variability in feeding. He recommended that we go ahead and get the G tube...it would relieve any problems getting her to eat on a regular basis...she would still continue to eat as usual...we would just suplement what she doesn't eat by using the tube. He also explained that it can be permanent, but it doesn't have to be. If she gets a g-tube, then starts to eat well on her own for 6 mos. or so, we can just take it out. It was obvious that it was weighing heavily on me, I think...he said, "Y'all really don't need to be agonizing over this...kids get G-tubes all the time...it's not like we're removing a limb..." I sort of laughed...but, he did acknowledge that there is an emotional issue involved too. He thought it was more of acknowledging that "there is really something wrong with my child if I have to do this." I explained that we've had that understanding for quite some time...it's not that. I just don't want to put her through something (and all of us) that may end up being unnecessary.
But....during our conversation, we also talked about Lydia's reflux...he asked if we felt that was resolved...I told him that I don't think that her feeding problems are related to reflux anymore.. He said that either the Prevacid is working...or maybe that she has just outgrown the reflux (which tends to happen in most typical kids around Lydia's age). I told him about her gagging and gasping episodes that she does sometimes when she eats but mostly when she takes medicine. I also told him about an email I had gotten from a mother of a child with Rett syndrome & mitochondrial dysfunction...who talked about the coordination of nose breathing being a problem. The problem of nose breathing coordination is that a person can suck and breathe through their nose at the same time with no problem....swallowing and breathing through the nose is a different story...it can not be done simultaneously....it has to be alternated. That presents a problem for some kids with mito issues. I've started to think that this may be Lydia's problem when she gags and gasps. That lead him to think that we need to repeat the pharyngogram (swallow study). We did one when Lydia was about 6-8 weeks old...results were fine, but we haven't done one since. The plan is this: pharyngogram scheduled for April 9th...follow-up with Dr Alberty April 11th with a plan to schedule an appt with a surgeon for the G tube.
In the meantime.....Lydia took 5 oz last night, then slept all night for the first time since her biopsy...she has taken at least 3 oz at every feeding so far today....4 oz at her last feeding. I guess she plans to keep us guessing!! These feeding habits lead me to believe that maybe she doesn't really need a feeding tube, but I've seen her appetite pick up like this before...then decline again. At least we'll have a few weeks to observe her feeding before actually inserting the tube...that may lend some pertinent information...to let us know that we are making the right decision or to let us know that we need to change our minds again. I'll continue to lean on the Lord to guide us to the right decision and to ask Him to be with Lydia through it all.
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