The inevitable is happening. The kids (well all of us) got a nasty, boogie cold. It is the kind that sends green pouring out of the kid's noses non-stop. I followed my plan and took both kids in to be examined. We got the viral diagnosis but the warning about secondary infections (aka sinus infections). Maggie and Ricky are both susceptible to these nasty infections. Rick humidified their rooms at night, we put them to bed early and did all in our power to get rid of the colds and hold off the sinus infection.
This morning Maggie sounded much better. Rick and I both commented on that fact that maybe she was over the hump of the cold and on her way to 100%. We spoke to soon because no more than an hour later, Maggie told me her sinuses by her nose hurt. As she pointed to the exact location she clarified, "They only hurt a little bit Mommy. I don't think they need IV antibiotics." Oh boy, here we go again!
I filled the prescription for Biaxin that Dr. T had given me on Monday. Maggie took her first dose tonight and she has until Tuesday for it to help clear up the infection. If on Tuesday she still has sinus pain, we are back to Dr. T. Honestly, I don't know what he will do and I don't think he knows either. He may chose to put her on Cipro which is a pretty strong antibiotic for kids. Or he may pull the trigger on the feared "IV Antibiotic".
The anxiety hits when I think of that. IV's are Maggie's biggest fear. She has just settled back down into normalcy after her last bout. I hate to think of bringing all that fear/anxiety up again. Hopefully with the help of our team, esp. Dr. Bothe, we have new tools to help alleviate some of the behaviors/feelings.
As for me, it breaks me heart. I don't want to see her sick the week before her birthday. Certainly I don't want to worry about ports and IV's over her birthday weekend. I want her to have fun and celebrate her big day with her awesome gymnastics party. It makes me angry that my kids have to go through situations like this. My heart feels sad, angry and worried all at one time. It doesn't help that Ricks seems to be getting no better. His nose is pouring out green boogies non-stop. If he doesn't improve by Tuesday he will be back to Dr. T to get his own antibiotic.
So here I am with 2 primary immune deficient children who are both sick. They both may be developing secondary infections from the basic common cold. They both may need strong antibiotics for long periods to wipe out the infections. I, as their mother, will be there the whole way. I will hold them during the scary times, try to kiss away the painful times, smile and support them through each moment and love them with all of my heart and soul. I will stay present the best I can and hold onto my faith that God is with us through each moment.
This is a journey and each moment helps us build strength for the next. I have no explanation or reason as to why any of this has happened to my sweethearts. All I have is the faith that there is a bigger picture and we are not alone. For all the bad, each experience has made everyone of us stronger and better. Our relationships, esp Rick and my marriage, have changed and deepened. So I guess this Good Friday I can look at the kids' PID as our cross to bear. I would rather take the perspective that it has been a blessing (although sometimes hard and heartbreaking).
Please God guide me and give me strength no matter what our journey holds the next couple weeks. With You by my side I can handle anything. Amen.
Friday, April 22, 2011
Wednesday, April 20, 2011
Drum Roll Please......
SURPRISE!!!
I took Ricks in to Dr. T to check out all the green stuff pouring out of his nose. Dr. T checked and for now all the Little Man has is a virus. We are watching him, as we are for Maggie, for the viral infection to turn into a bacterial. I am keeping the prayers, faith and positive thought going for both that they battle the cold and fight the secondary infection.
Now for the AWESOME surprise! I was not expecting Ricks test results to be back for at least another week. When Dr. T's intern/fellow came in and told me they had received them today I was floored. This means an end to my anxiety over what was happening and the options out there for my baby. Here are the results:
Allergies: All allergy results came back negative except cat/dog. This means Ricks' blood works shows he is NOT allergic to egg, fish or seasonal/inhalants. EGG?!?!!! Amazing! The next step is an egg challenge which is a bit difficult because Ricks needs to be healthy. Dr. T advised we wait until July were we have a better chance of him being infection free. We will also do a penicillin challenge in July to answer the question of whether he is allergic to penicillin or not. The allergy testing get a big thumbs up from Mommy : )
Immunity: Dr. T was concerned about how low the IgG numbers had gone this past testing. He had talked about possibly needing to revaccinate twice before we get the numbers where he wanted them. The results show this is not necessary! Ricks' IgG numbers are right where Dr. T wants them to be. Now when he gets a cold (like now) his IgG should work correctly and fight the infection. Plus it should be able to fight off any secondary infection that tries to take hold. WHEW!!! Dr. T is still waiting on 2 results but they will most likely be fine after reading these results. I would be surprised if he got a new diagnosis with the information we got today.
So why so much rejoicing and happiness. On the immunity level, the more of his immune system that works the better. It helps to have one of the big guns in the system up and running so he gets less infections/illnesses. Maggie had the same thing and the revaccinations seems to have pumped up her system. I feel like she has had her concerns but also has fought off a lot of infections. It eases my fears and concerns that we will repeat his six week stint of being sick this past January.
The egg allergy info is a huge weight off my back. I hated the thought of sending Ricks anywhere were he would eat without me there. I struggled with my fears that someone or somehow a mistake would be made and he would eat something with egg. And from there he would go into anaphylatic shock. This anxiety has made it harder to let go. The thought of preschool just made my stomach turn a bit. How would I control what he was eating? I would have trust the school, his teachers and other parents. That felt huge with my little baby!
One of the reasons I was so adamant was the safety issue. I also wanted to do all I could to help him outgrow this allergy asap. I wanted to be able to send him to school minus the fear or epi pen. I wanted the confidence to know that he would be as safe as can normally be expected at school or in the world. On a basic level, I wanted him to experience life as a "normal" kid. I wanted him to be able to have cake and ice cream at birthday parties, a cookie at the grocery store or a treat at a play date. It will be much easier to leave him with a babysitter or friend knowing that he can eat anything with out the fear of death.
This is all still a maybe until we do that egg challenge. We have to get past that before we can let our guard down. Until that test, Ricks is still egg-free. But the blood test does make me feel a bit better that if he does get some egg from somewhere, he hopefully will not go into shock. We thought in the fall that he might have grown out of it until he reacted to the flu shot. So I will try to keep my expectations realistic that there is still a chance he will be egg-free after the challenge.
Both of these items are blessings from God for my Little Blessing. I struggle sometimes with handing my children and their concerns over. My faith, although strong and consistent, is sometimes tested. In the end, God never lets us fall. He surprises us with things like these wonderful test results. The past couple of days I have been sick, tired and cranky. I have forgotten how blessed I am. Our journey is sometimes interesting. We hit bumpy spots, rainy times and every once in a while we get the miracle of a rainbow. Today we got one of those rainbows. I rejoice in that joy and the Power that blessed us with it. Thank you God for Your love, patience and magnificence.
I took Ricks in to Dr. T to check out all the green stuff pouring out of his nose. Dr. T checked and for now all the Little Man has is a virus. We are watching him, as we are for Maggie, for the viral infection to turn into a bacterial. I am keeping the prayers, faith and positive thought going for both that they battle the cold and fight the secondary infection.
Now for the AWESOME surprise! I was not expecting Ricks test results to be back for at least another week. When Dr. T's intern/fellow came in and told me they had received them today I was floored. This means an end to my anxiety over what was happening and the options out there for my baby. Here are the results:
Allergies: All allergy results came back negative except cat/dog. This means Ricks' blood works shows he is NOT allergic to egg, fish or seasonal/inhalants. EGG?!?!!! Amazing! The next step is an egg challenge which is a bit difficult because Ricks needs to be healthy. Dr. T advised we wait until July were we have a better chance of him being infection free. We will also do a penicillin challenge in July to answer the question of whether he is allergic to penicillin or not. The allergy testing get a big thumbs up from Mommy : )
Immunity: Dr. T was concerned about how low the IgG numbers had gone this past testing. He had talked about possibly needing to revaccinate twice before we get the numbers where he wanted them. The results show this is not necessary! Ricks' IgG numbers are right where Dr. T wants them to be. Now when he gets a cold (like now) his IgG should work correctly and fight the infection. Plus it should be able to fight off any secondary infection that tries to take hold. WHEW!!! Dr. T is still waiting on 2 results but they will most likely be fine after reading these results. I would be surprised if he got a new diagnosis with the information we got today.
So why so much rejoicing and happiness. On the immunity level, the more of his immune system that works the better. It helps to have one of the big guns in the system up and running so he gets less infections/illnesses. Maggie had the same thing and the revaccinations seems to have pumped up her system. I feel like she has had her concerns but also has fought off a lot of infections. It eases my fears and concerns that we will repeat his six week stint of being sick this past January.
The egg allergy info is a huge weight off my back. I hated the thought of sending Ricks anywhere were he would eat without me there. I struggled with my fears that someone or somehow a mistake would be made and he would eat something with egg. And from there he would go into anaphylatic shock. This anxiety has made it harder to let go. The thought of preschool just made my stomach turn a bit. How would I control what he was eating? I would have trust the school, his teachers and other parents. That felt huge with my little baby!
One of the reasons I was so adamant was the safety issue. I also wanted to do all I could to help him outgrow this allergy asap. I wanted to be able to send him to school minus the fear or epi pen. I wanted the confidence to know that he would be as safe as can normally be expected at school or in the world. On a basic level, I wanted him to experience life as a "normal" kid. I wanted him to be able to have cake and ice cream at birthday parties, a cookie at the grocery store or a treat at a play date. It will be much easier to leave him with a babysitter or friend knowing that he can eat anything with out the fear of death.
This is all still a maybe until we do that egg challenge. We have to get past that before we can let our guard down. Until that test, Ricks is still egg-free. But the blood test does make me feel a bit better that if he does get some egg from somewhere, he hopefully will not go into shock. We thought in the fall that he might have grown out of it until he reacted to the flu shot. So I will try to keep my expectations realistic that there is still a chance he will be egg-free after the challenge.
Both of these items are blessings from God for my Little Blessing. I struggle sometimes with handing my children and their concerns over. My faith, although strong and consistent, is sometimes tested. In the end, God never lets us fall. He surprises us with things like these wonderful test results. The past couple of days I have been sick, tired and cranky. I have forgotten how blessed I am. Our journey is sometimes interesting. We hit bumpy spots, rainy times and every once in a while we get the miracle of a rainbow. Today we got one of those rainbows. I rejoice in that joy and the Power that blessed us with it. Thank you God for Your love, patience and magnificence.
Tuesday, April 19, 2011
Long Night
Last night by 10:30 both kids were up and feeling horrible. Maggie woke up with a cough that wouldn't stop and Ricks was so congested he couldn't sleep. A few minutes later Rick came upstairs to report that he felt under the weather with the same cold. I got Ricks settled back in his crib around 11:30ish and Maggie fell asleep on me. Rick decided that he couldn't fall asleep so he went back down to study.
Soon enough my body started to ache and my nose felt congested. I squirmed out from under Maggie long enough to get some Thera Flu. As soon as I got comfortable again about 1 both kids woke up again. Maggie needed a couple puffs of albuterol and Ricks just couldn't sleep. So we were up until after 3 when he started to fall asleep sitting up while watching Elmo. Ricks was up again at 5:30 and finally 7 am for the day.
Rick came up to bed at 1 to help with Ricks. So both of us feel under the weather and got close to no sleep. The kids are sick and the lack of sleep has made them grouchy. Okay I will be honest, the lack of sleep has made me feel extremely grouchy. My mood from last night has only gotten surly. I am doing all I can not to crab and snap at people who call or email. Today is a rainy, cold day and truly not one of my best. I would love to be a hermit crab who could crawl back into my shell until the sun comes out and I feel better.
I don't have that option because I am the Mom. I have to find the strength, love and patience. I just read in one of my books about looking to God for strength and man do I need it now. My Mom told me something important this morning when I called her feeling like I was at the end of my rope. She told me that God allows us to have human moments and fall apart. We are allowed to have bad days where we feel cruddy and struggle. It is on those days He lifts us up and carries us like the poem footprints. My Mom's advice was, "Let him carry you today. Feel sad, angry, crappy but stay hopeful and know He is there."
And that is what I am going to do. My body aches, my head hurts, my nose is congested and I am exhausted. My emotions are exaggerated and well-meaning wishes/advice makes me want to scream. All I want is people to offer a hope you feel better and move on. I am capable and able to take care of my kids when all of us are sick. I just feel grouchy and want to say it sucks. I don't need directives and ideas. Man am I grouchy. I just need to remember that this to shall pass. Tomorrow will be better. God just keep sending me the strength.
Soon enough my body started to ache and my nose felt congested. I squirmed out from under Maggie long enough to get some Thera Flu. As soon as I got comfortable again about 1 both kids woke up again. Maggie needed a couple puffs of albuterol and Ricks just couldn't sleep. So we were up until after 3 when he started to fall asleep sitting up while watching Elmo. Ricks was up again at 5:30 and finally 7 am for the day.
Rick came up to bed at 1 to help with Ricks. So both of us feel under the weather and got close to no sleep. The kids are sick and the lack of sleep has made them grouchy. Okay I will be honest, the lack of sleep has made me feel extremely grouchy. My mood from last night has only gotten surly. I am doing all I can not to crab and snap at people who call or email. Today is a rainy, cold day and truly not one of my best. I would love to be a hermit crab who could crawl back into my shell until the sun comes out and I feel better.
I don't have that option because I am the Mom. I have to find the strength, love and patience. I just read in one of my books about looking to God for strength and man do I need it now. My Mom told me something important this morning when I called her feeling like I was at the end of my rope. She told me that God allows us to have human moments and fall apart. We are allowed to have bad days where we feel cruddy and struggle. It is on those days He lifts us up and carries us like the poem footprints. My Mom's advice was, "Let him carry you today. Feel sad, angry, crappy but stay hopeful and know He is there."
And that is what I am going to do. My body aches, my head hurts, my nose is congested and I am exhausted. My emotions are exaggerated and well-meaning wishes/advice makes me want to scream. All I want is people to offer a hope you feel better and move on. I am capable and able to take care of my kids when all of us are sick. I just feel grouchy and want to say it sucks. I don't need directives and ideas. Man am I grouchy. I just need to remember that this to shall pass. Tomorrow will be better. God just keep sending me the strength.
Monday, April 18, 2011
Nauesated
I started this blog to have a place to let it out. I wanted somewhere to vent or spill so I could get out the emotion. This would help me let go, move on and be a better parent for my kids. I could ease my stress and be strong for them when they needed me. So tonight is one of those posts!
I feel sick to my stomach and like I am going to throw up. My stomach is so tied up it physically hurts. Tears are welling in my eyes and my heart aches. I experiencing that moment of being overwhelmed and this is all to much for me to handle. How can I walk my two children through the craziness of all this medical madness?
Maggie has been experiencing what I assumed where spring allergies. Then the green stuff started yesterday. Today it continued and during lunch she sneezed so hard that green nasties just poured out of her nose. Rick and I both knew this was not a good sign. A call to Dr. T was in order. He had me bring her in so he could take a look. His diagnosis was the beginning of an infection in her sinuses. There was green stuff back there but it wasn't to bad yet. Due to her penicillin allergy and limited antibiotic choices, he wants to wait and see if her body can fight it off.
So we wait until Friday, if Maggie is not better we start the antibiotic. The antibiotic of the moment is Biaxin which she has taken before and has done absolutely nothing. If she is not better by next Tuesday on an antibiotic we return to make the decision of what to do next. Do we put her on the powerful Cipro which could rupture a tendon? Or do we go to the IV antibiotics? The IV will most likely send her into a tailspin of emotional stress? IV's are her biggest fear and it breaks my heart that she may have to go through them again.
After getting home from the doctor with Maggie, Ricks woke up crying from his nap. As I picked him up I saw the green boogers all over his face. He cried inconsolably for at least 20 minutes until the ibuprofen kicked in. Now he is struggling to go to sleep and uncharacteristically fussing and crying. I may be back at Dr. T's in the next couple days to have him examined.
This experience is what makes being the Mommy to two kids with pidd so hard. It breaks my heart when they are sick. I think that is true for any mother. The problem is as a zebra Mommy, it seems to happen more frequently and sometimes longer and more severe than the "normal". There is nothing I can do but do my best to comfort them and take care of them. The infection is going to run its course and we will have to just wait and see.
I know that I have to hand this over to God. I need to hold on to my faith. I need to let God carry us. I have to breathe and remember that no matter what God will walk with us on this journey. Then I can be strong, brave and calm. I can be present in the moment and give my kids the care and love they need. But first I need to take a bath and have a good cry. I need to let down and let God hold me close to His heart. I need to be consoled and supported by the Mom I so longingly want to be - Mary. And then I can say my prayers and kiss my babies and take the next steps in this lifelong journey.
I feel sick to my stomach and like I am going to throw up. My stomach is so tied up it physically hurts. Tears are welling in my eyes and my heart aches. I experiencing that moment of being overwhelmed and this is all to much for me to handle. How can I walk my two children through the craziness of all this medical madness?
Maggie has been experiencing what I assumed where spring allergies. Then the green stuff started yesterday. Today it continued and during lunch she sneezed so hard that green nasties just poured out of her nose. Rick and I both knew this was not a good sign. A call to Dr. T was in order. He had me bring her in so he could take a look. His diagnosis was the beginning of an infection in her sinuses. There was green stuff back there but it wasn't to bad yet. Due to her penicillin allergy and limited antibiotic choices, he wants to wait and see if her body can fight it off.
So we wait until Friday, if Maggie is not better we start the antibiotic. The antibiotic of the moment is Biaxin which she has taken before and has done absolutely nothing. If she is not better by next Tuesday on an antibiotic we return to make the decision of what to do next. Do we put her on the powerful Cipro which could rupture a tendon? Or do we go to the IV antibiotics? The IV will most likely send her into a tailspin of emotional stress? IV's are her biggest fear and it breaks my heart that she may have to go through them again.
After getting home from the doctor with Maggie, Ricks woke up crying from his nap. As I picked him up I saw the green boogers all over his face. He cried inconsolably for at least 20 minutes until the ibuprofen kicked in. Now he is struggling to go to sleep and uncharacteristically fussing and crying. I may be back at Dr. T's in the next couple days to have him examined.
This experience is what makes being the Mommy to two kids with pidd so hard. It breaks my heart when they are sick. I think that is true for any mother. The problem is as a zebra Mommy, it seems to happen more frequently and sometimes longer and more severe than the "normal". There is nothing I can do but do my best to comfort them and take care of them. The infection is going to run its course and we will have to just wait and see.
I know that I have to hand this over to God. I need to hold on to my faith. I need to let God carry us. I have to breathe and remember that no matter what God will walk with us on this journey. Then I can be strong, brave and calm. I can be present in the moment and give my kids the care and love they need. But first I need to take a bath and have a good cry. I need to let down and let God hold me close to His heart. I need to be consoled and supported by the Mom I so longingly want to be - Mary. And then I can say my prayers and kiss my babies and take the next steps in this lifelong journey.
Saturday, April 16, 2011
Allergies
Spring allergies are here! The tree pollen is high and hitting us. I am achey, tired and just congested. Maggie has the runny nose, congestion and her lungs hurt. It just sucks all around. We have already been taking the antihistamines but they seem pretty worthless today. I am so ready for summer to come - warm temperatures, sunny days and relaxing outside in the backyard. Summer don't keep me waiting to long!
Thursday, April 14, 2011
Part 2 is Done
Tonight I am exhausted! The past two days have felt like a whirlwind of business and craziness. Add in some good fresh air time and the stress of blood work and you get one pooped out Mommy. Maggie and I went to gymnastics and seemed to get all of yesterdays errands done. Plus we had our lovely crisis where we thought we lost her medical bracelet. This meant rewalking our whole path in Target and driving back to gymnastics (which was a madhouse with after-school classes). The bracelet was found in the car and had fallen out of my purse as I was trying to reach my phone. Lesson is "Don't talk on the phone while driving because you will do goofy stuff like drop the bracelet".
After all that and a trip to Giant Eagle to pick up dinner, I still had a night full of work to do. I am very grateful for my new positions on parish council but I had approximately an hour of work to do for them. I needed to make a menu and grocery list for this morning. Not to mention the basic stressing out that I normally due before any kind of medical test. I think I fell asleep at around 1 in the morning.
Today was another crazy one as Ricks and I dropped Maggie off at her cousins. We then went to do his bloodwork (7 vials worth), run back to Target and go to Whole Foods. My Little Man was done by the time we returned home. I made lunch and finally sat down for a minute. As soon as Rick got home he put Ricky down for nap and I went to the grocery store. I hurried home and put the groceries away so I could pick up the Mags. After picking up Maggie and getting Ricks up from nap we finally got to relax.
I took the kids outside and they played for 2 hours before dinner. We enjoyed hot dogs and sausages from the grill for the first time this year. It was finally bath time, quiet time and bed time. Maggie was so tired she could barely walk and spent a lot of time whining. I think all of us are exhausted.
So the 2nd part of the test is done. I can forget that part and move on. It was good to have time to stop and watch Ricks play this afternoon. It was a good reminder that he is a strong, healthy boy. This knowledge helps me hand over my worries to God and move one. I can be present in his joy and happiness.
I am so tired I don't even know what I am writing. I believe it is time to relax and head in for an early night.
After all that and a trip to Giant Eagle to pick up dinner, I still had a night full of work to do. I am very grateful for my new positions on parish council but I had approximately an hour of work to do for them. I needed to make a menu and grocery list for this morning. Not to mention the basic stressing out that I normally due before any kind of medical test. I think I fell asleep at around 1 in the morning.
Today was another crazy one as Ricks and I dropped Maggie off at her cousins. We then went to do his bloodwork (7 vials worth), run back to Target and go to Whole Foods. My Little Man was done by the time we returned home. I made lunch and finally sat down for a minute. As soon as Rick got home he put Ricky down for nap and I went to the grocery store. I hurried home and put the groceries away so I could pick up the Mags. After picking up Maggie and getting Ricks up from nap we finally got to relax.
I took the kids outside and they played for 2 hours before dinner. We enjoyed hot dogs and sausages from the grill for the first time this year. It was finally bath time, quiet time and bed time. Maggie was so tired she could barely walk and spent a lot of time whining. I think all of us are exhausted.
So the 2nd part of the test is done. I can forget that part and move on. It was good to have time to stop and watch Ricks play this afternoon. It was a good reminder that he is a strong, healthy boy. This knowledge helps me hand over my worries to God and move one. I can be present in his joy and happiness.
I am so tired I don't even know what I am writing. I believe it is time to relax and head in for an early night.
Wednesday, April 13, 2011
Stress Management
Tomorrow is part 2 of our 3 part test for Ricky. As I have written in a previous blog, his last immune numbers were not that great. We had to re-immunize him 3 weeks ago to try and boost his IgG levels. We are now at the blood work part of the test. Ricky goes in tomorrow morning and gives a crazy amount of blood. The next and final step is 2 weeks away when we meet with Dr. T.
The blood work is for the immune concerns and allergies so the amount is more than usual. This is concerning because I wonder if Ricky will be okay with the process. And if he isn't, will it take longer than the normal to get all needed vials. I hate the process and having to hold my Little Man down while they poke and prod him. It breaks me heart every time I have to do it with either Maggie or Ricks.
The main stress is something that we won't know until our meeting with Dr. T. There are 4 scenarios that can come from the latest blood work:
1. The IgG numbers go up and we can breathe a sigh of relief until the next round of bloodwork
2. The numbers don't go up and we have to re-immunize and do this all over again
3. The numbers don't go up, re-immunize again and then end up giving Ricky prophylactic antibiotics.
4. The numbers show that Ricks gets a new and more serious diagnosis.
So as you can guess, I am praying for number 1! There is nothing I can do about any of it now. I have told myself that I will worry about the day we sit down in Dr. T's office to get the results. To worry now would waste the next weeks. I don't even want to think about all energy I would exert and the things I would miss fretting over it. So we put one foot in front of the other and have faith.
If the result is #1, we will celebrate! If the result is #2, 3 or 4 we will do the next right thing just as we have the past year. If there is one thing I have learned, it is all doable. God will never let us fall on our journey. It may get bumpy and scary but He will be there to help us navigate and find our way. I suppose that is why I feel okay with it all. I have a complete belief that even if the news is the ultimate worst, God will be there to hold us and carry us until we can manage. He has provided for us throughout this whole journey. And each moment has helped us grow and change to make us stronger. Sometimes I don't know the whys of what happens. I do know we are not alone and God's love will be there through it all.
The blood work is for the immune concerns and allergies so the amount is more than usual. This is concerning because I wonder if Ricky will be okay with the process. And if he isn't, will it take longer than the normal to get all needed vials. I hate the process and having to hold my Little Man down while they poke and prod him. It breaks me heart every time I have to do it with either Maggie or Ricks.
The main stress is something that we won't know until our meeting with Dr. T. There are 4 scenarios that can come from the latest blood work:
1. The IgG numbers go up and we can breathe a sigh of relief until the next round of bloodwork
2. The numbers don't go up and we have to re-immunize and do this all over again
3. The numbers don't go up, re-immunize again and then end up giving Ricky prophylactic antibiotics.
4. The numbers show that Ricks gets a new and more serious diagnosis.
So as you can guess, I am praying for number 1! There is nothing I can do about any of it now. I have told myself that I will worry about the day we sit down in Dr. T's office to get the results. To worry now would waste the next weeks. I don't even want to think about all energy I would exert and the things I would miss fretting over it. So we put one foot in front of the other and have faith.
If the result is #1, we will celebrate! If the result is #2, 3 or 4 we will do the next right thing just as we have the past year. If there is one thing I have learned, it is all doable. God will never let us fall on our journey. It may get bumpy and scary but He will be there to help us navigate and find our way. I suppose that is why I feel okay with it all. I have a complete belief that even if the news is the ultimate worst, God will be there to hold us and carry us until we can manage. He has provided for us throughout this whole journey. And each moment has helped us grow and change to make us stronger. Sometimes I don't know the whys of what happens. I do know we are not alone and God's love will be there through it all.
Saturday, April 9, 2011
Bad News
Approximately a year ago Maggie was diagnosed with Selective IgA Deficiency. I had no idea what that meant and was filled with fear. Rick and I had never heard of anything like this and so it was all new and very scarey to us. Our friends and family were supportive and tried their best to be there for all of us. So many people have tried to understand and help us out during some stressful times. As we learned more and Ricky was diagnosed I felt as if this wave swept over me and I drifted out to sea. It was if I was stuck on some pidd island all alone and extremely overwhelmed and afraid. I talked with one or two people who had some experiences with immune deficiencies but nothing or no one on a constant basis. The weight began to drown me and I wondered if I could manage or handle what God had placed on this journey.
One day I made a phone call to the Immune Deficiency Foundation and was hooked up with Becky. She was my pidd mentor and a fellow Mom of a child with pidd. We talked a few times and she gave me enormous support. The best gift she gave to me was inviting me to join a group on facebook called Down with PIDD - yeah you know me. That group has been a huge blessing in my life. It is filled with Moms who have children (old and young) with pidd and people who themselves have pidd. I have turned to them with questions, frustrations and joys. In each moment I have shared they have supported me and shared their experiences. The wild thing is that I have known these people only 4 months and only through a computer. I have never met any of them personally yet I feel as if some of them are as close to me as my closest friends who live minutes from me.
It is strange how a condition or experience can bring people together. And in this day and age it does it in unique ways such as facebook. Some of my friends live in the south, some on the west coast and a few nearby. Each one of these people have touched my life in so many ways. On my bad days the have reminded me that I am doing the best I can for my two little zebras. I have struggled with this journey. Since joining the group, the road has gotten much smoother and the bumpy spots have become easier to navigate.
So I have shared all the blessings the zebras have given to me and now to share the bad news. Tonight I got on the computer to find out one of most awesome Moms I have shared with has hit a severe bump in her journey. She has had a massive stroke and is hospitalized unable to speak. We are getting sketchy information from a couple of members but it doesn't sound good. Her son has been sick himself with his pidd and they have been struggling.
I feel sick to my stomach with this news. I am filled with grief and keep hoping that I will get some good news coming across the screen. Again, it just amazes how someone so far away has touched my life so deeply. I keep praying for her, her son and her family. May God hold them all close to his heart. I can't do much but I can keep praying.
One day I made a phone call to the Immune Deficiency Foundation and was hooked up with Becky. She was my pidd mentor and a fellow Mom of a child with pidd. We talked a few times and she gave me enormous support. The best gift she gave to me was inviting me to join a group on facebook called Down with PIDD - yeah you know me. That group has been a huge blessing in my life. It is filled with Moms who have children (old and young) with pidd and people who themselves have pidd. I have turned to them with questions, frustrations and joys. In each moment I have shared they have supported me and shared their experiences. The wild thing is that I have known these people only 4 months and only through a computer. I have never met any of them personally yet I feel as if some of them are as close to me as my closest friends who live minutes from me.
It is strange how a condition or experience can bring people together. And in this day and age it does it in unique ways such as facebook. Some of my friends live in the south, some on the west coast and a few nearby. Each one of these people have touched my life in so many ways. On my bad days the have reminded me that I am doing the best I can for my two little zebras. I have struggled with this journey. Since joining the group, the road has gotten much smoother and the bumpy spots have become easier to navigate.
So I have shared all the blessings the zebras have given to me and now to share the bad news. Tonight I got on the computer to find out one of most awesome Moms I have shared with has hit a severe bump in her journey. She has had a massive stroke and is hospitalized unable to speak. We are getting sketchy information from a couple of members but it doesn't sound good. Her son has been sick himself with his pidd and they have been struggling.
I feel sick to my stomach with this news. I am filled with grief and keep hoping that I will get some good news coming across the screen. Again, it just amazes how someone so far away has touched my life so deeply. I keep praying for her, her son and her family. May God hold them all close to his heart. I can't do much but I can keep praying.
Friday, April 8, 2011
Insert Foot in Mouth
Today was an interesting day. Let's just say that I felt a bit stressed and my mind was racing. I, for some reason, was feeling anxious about Maggie's hoarse voice and Ricky's upcoming blood work/test results. My husband was feeling anxious about school and all the things he had to do. Add all the anxiety to a day full of to-do's on my end and to-do's on his and you get some tension.
So after a bit of wrangling about things and being off schedule already at 11 AM, I raced off to meet up for Maggie's conference. The conference as a whole was great. I heard what I already knew - my girl is an amazing, sweet and smart girl. She cares about her friends and reaches out to those who are sad, lonely or just need a little help. I felt so proud of her! The academic stuff is low on my priority with school for her. Maggie is smart and right where she needs to be. My priority is her social development. It is so important at this age to learn to listen, share, play and resolve conflicts. I know from my experiences that the social is the most important thing going on in this year of schooling. In the end, she is doing well in all areas and thriving!
Of course, me being me and stressing had to make a bit of goof of myself. The filter wasn't working and so I had to ask about a situation that developed at the beginning of the week. If that wasn't bad enough, I had to make a comment about someone who is involved which was more of an assumption than a fact. I must remember that not every thought I have has to come out of my mouth! After I got home I felt badly so I tried to rectify it and be accountable. I am not sure that the person I tried with really cared or got it but at least I made the effort. Sometimes I can be so wrapped up that I forget to censor the crap that comes out of my mouth.
I feel bad and have beaten myself up a bit. But the good news was that when I posted on facebook about it other people stated they were the same way. And it will pass and soon be forgotten. I made a mistake and tried to rectify it. It is hard but I have to remind myself I am human and not perfect. It is great to know that the happenings of today are now in the past and that I have a chance to learn and grow from the experience. That is my silver lining of the whole thing : )
So after a bit of wrangling about things and being off schedule already at 11 AM, I raced off to meet up for Maggie's conference. The conference as a whole was great. I heard what I already knew - my girl is an amazing, sweet and smart girl. She cares about her friends and reaches out to those who are sad, lonely or just need a little help. I felt so proud of her! The academic stuff is low on my priority with school for her. Maggie is smart and right where she needs to be. My priority is her social development. It is so important at this age to learn to listen, share, play and resolve conflicts. I know from my experiences that the social is the most important thing going on in this year of schooling. In the end, she is doing well in all areas and thriving!
Of course, me being me and stressing had to make a bit of goof of myself. The filter wasn't working and so I had to ask about a situation that developed at the beginning of the week. If that wasn't bad enough, I had to make a comment about someone who is involved which was more of an assumption than a fact. I must remember that not every thought I have has to come out of my mouth! After I got home I felt badly so I tried to rectify it and be accountable. I am not sure that the person I tried with really cared or got it but at least I made the effort. Sometimes I can be so wrapped up that I forget to censor the crap that comes out of my mouth.
I feel bad and have beaten myself up a bit. But the good news was that when I posted on facebook about it other people stated they were the same way. And it will pass and soon be forgotten. I made a mistake and tried to rectify it. It is hard but I have to remind myself I am human and not perfect. It is great to know that the happenings of today are now in the past and that I have a chance to learn and grow from the experience. That is my silver lining of the whole thing : )
Wednesday, April 6, 2011
Mistakes
I had a conversation tonight about motherhood and mistakes. When I was pregnant I had a picture of what kind of Mom I wanted to be and how I was going to parent. Then Maggie was born and the fear hit. I realized how amazing this little person was and how much I loved her. And I realized that the image I had created might not be the reality of being the "Mom".
Four years and two kids later I have realized that the reality is far more awesome than my expectations of motherhood. My belief was that I could, and would, be the "perfect" mother. Once the baby was here and I struggled, the anxiety started to set in. When I made mistakes, because I am only human, I beat myself up.
The past year and all its craziness has taught me some very important lessons. One of the biggest lessons is that I will make mistakes but I need to learn from them and move on. Mistakes are a part of life, especially parenting. So when I make a mistake I try to make my amends, learn from them and grow a little bit. Most importantly, I love my children with everything I have. I try to do the right thing for them and be a good role model. I pray that God will watch over them and guide them, despite all of my mistakes.
Four years and two kids later I have realized that the reality is far more awesome than my expectations of motherhood. My belief was that I could, and would, be the "perfect" mother. Once the baby was here and I struggled, the anxiety started to set in. When I made mistakes, because I am only human, I beat myself up.
The past year and all its craziness has taught me some very important lessons. One of the biggest lessons is that I will make mistakes but I need to learn from them and move on. Mistakes are a part of life, especially parenting. So when I make a mistake I try to make my amends, learn from them and grow a little bit. Most importantly, I love my children with everything I have. I try to do the right thing for them and be a good role model. I pray that God will watch over them and guide them, despite all of my mistakes.
Tuesday, April 5, 2011
The Sniffles Continue
The colds have hit and we are now under siege! Maggie is running a low-grade temp and has lost her voice. She sounds so hoarse, like she just smoked a pack and a half of cigarettes. The big concern is tomorrow is gymnastics day and she is rearing to go. She missed a couple of weeks ago due to asthma and last week was spring break. Now she is fearful that we will decide she can't go because of this cold.
I have promised to see what tomorrow brings. As long as she has no fever, green stuff or asthma symptoms I will let her go. I am hoping that, or better, is our reality in the morning. I think she will be just fine and have a great time in class.
Ricky is just a mess. He woke up early this morning coughing and had a hard time napping. So he is overtired and not feeling well. He is fighting bedtime and wanting Mommy. There is finally quiet coming from his room. Hopefully he has laid his head down and getting the needed sleep to fight the germs.
It is primary immune deficiency awareness month so I guess it is fitting to be battling the germs. Just hoping it is a quick victory for our side!
I have promised to see what tomorrow brings. As long as she has no fever, green stuff or asthma symptoms I will let her go. I am hoping that, or better, is our reality in the morning. I think she will be just fine and have a great time in class.
Ricky is just a mess. He woke up early this morning coughing and had a hard time napping. So he is overtired and not feeling well. He is fighting bedtime and wanting Mommy. There is finally quiet coming from his room. Hopefully he has laid his head down and getting the needed sleep to fight the germs.
It is primary immune deficiency awareness month so I guess it is fitting to be battling the germs. Just hoping it is a quick victory for our side!
Monday, April 4, 2011
Sniffles Part 2
So my 2 babies have the sniffles tonight. Here's hoping it passes and by morning we are sniffle free :)
Sunday, April 3, 2011
Bear
Bear is Ricky's best friend and our "Velveteen Rabbit". He was a random teddy bear that Maggie brought home from Grandma's house for Ricks. Bear was first through out of the crib and discarded. Then one day, Ricky grabbed hold of this brown bear and hasn't let go. Ricks takes Bear everywhere with him and that includes the tub. The other night as I tried to get both kids bathed and ready for bed, I noticed Ricky holding on tight to Bear as he floated in the bubbly water of the bath. Ricks looked at me with these gorgeous eyes and said, "Bear tubby!"
This Bear is not only Ricks most prized possession, he is one of my most cherished items. He is my baby's first friend. Bear is there for Ricks when I can't be. He consoles him and loves him. To me, Bear is both a reminder of my baby boy growing up and staying little at the same time.
I know that even when Ricky is just known as Rick and he is headed off to college, I will hold on to Bear. He will be a reminder of all the wonderful moments we have had and the special little boy who hugged and held Bear tight.
This Bear is not only Ricks most prized possession, he is one of my most cherished items. He is my baby's first friend. Bear is there for Ricks when I can't be. He consoles him and loves him. To me, Bear is both a reminder of my baby boy growing up and staying little at the same time.
I know that even when Ricky is just known as Rick and he is headed off to college, I will hold on to Bear. He will be a reminder of all the wonderful moments we have had and the special little boy who hugged and held Bear tight.
Friday, April 1, 2011
Crazy
Ricky has been driving me crazy!!!! He is pure 2 year old boy running around and throwing things all over the place. Food, toys, the remote and phones are all fair game to throw. If he gets angry you better duck because you might get hit by random items flying through the air. Rick and I have tried all kinds of consequences and time outs to stop the behavior. Nothing we do seems to help and we feel as if this is another stage. So we continue on and work on a consistent reminder that the behavior is not acceptable.
Ricky responds to our attempts at discipline with a smile and a sparkle. He sits in time out or takes his consequence and then gives me that gorgeous smile. After all is done he comes to me and tells me "Sorry" in his sweet 2 year old voice. He finishes it with one of his priceless kisses.
Here is my dilemma: I try to hold true to that consistent parenting. I work hard to keep the straight face and stern look. When the truth is I melt every time he smiles at me. And when I get the sorry and the kiss, my heart is putty in his little hands. I will go on record now and say that I am wrapped around all 10 of those toddler fingers. Ricky has his Mommy's number and I love it!
Ricky responds to our attempts at discipline with a smile and a sparkle. He sits in time out or takes his consequence and then gives me that gorgeous smile. After all is done he comes to me and tells me "Sorry" in his sweet 2 year old voice. He finishes it with one of his priceless kisses.
Here is my dilemma: I try to hold true to that consistent parenting. I work hard to keep the straight face and stern look. When the truth is I melt every time he smiles at me. And when I get the sorry and the kiss, my heart is putty in his little hands. I will go on record now and say that I am wrapped around all 10 of those toddler fingers. Ricky has his Mommy's number and I love it!
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