Croup & Yeast Diaper Rash update

An update to Wednesday night. Liam was up almost every half-hour. By 9pm he was hysterical and short of breath. I took him into the bathroom, ran a steamy shower and called the on-call nurse. After a series of questions, and listening to Liam becoming frantic in the background, she confirmed that he was going through "strider", a complication of croup and that he should stay in the bathroom for 20 minutes. She instructed that I try to calm him and that she would call back. 

Once calm, he was still wheezy but not making any horrible "short of breath" sounds. We went out into the night air, listened to crickets and waited for the nurse to call back, which she did, just as she said she would. She informed me that I should call back if "strider" happened again and that I should sleep in the same room as him, keep him elevated, run a cool-mist humidifier and feed him honey-water to soothe his throat. She also said that I should make an appointment with his pediatrician first thing in the morning.

The rest of the night was a blur. Steve was still on night crew (not coming home till 5:30am) and by the time I hung up with the nurse it was 10:30pm. I gave Liam a sippy of milk and then cuddled him till he got sleepy. He went back down to sleep in his crib relatively well and once asleep, I pulled in pillows and blankets to make myself a makeshift bed on his floor. And there was where I slept for the rest of the night. He woke up 3 times throughout the night. Once he wanted to cuddle and so there we slept, both on the floor of his room till about 2am. Then he woke up and wanted more milk. Since he has not drunk or ate much that day, I had no issues giving him another bottle. He drank in haste and went back to sleep till about 6am. 

By the next day his voice sounded worse and his cough had increased.I called and made an appointment for that morning, which went ok.  She confirmed that he did have croup as well as a yeast diaper rash. She gave him 1.5 steroid tablets in a little baggy for the croup and prescribed nystatin cream (of which I already had) for the rash. She also explained that after croup, he will get a very "junky" cold.

We are back in cloth (and cloth wipes) and so I cut up one of Steves' old t-shirts to use as a "barrier" between the diaper and the cream. So far the steroid worked like a charm, clearing up his raspy voice and the nystatin cream is working well. He is getting that "junky" cold she talked about and has a phlegmy sounding cough. But all in all, he is doing MUCH better. I can only think... what next?

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Did daycare just give Liam croup?!

My poor little man was fine over the weekend. We suspected teething pain but no fever, no real fuss. We even went to the library Saturday, played with trains and played "chef" in the play kitchen. He was a drooling mess but had a blast.

Then on Monday he was sent home from daycare with a fever. This was also around the same time that a diaper rash was starting so I assumed, oh no, here come's a week of Diaper Rash Hell and teething pain. We gave him some fever reducing medication and hoped that he would feel better the next day. I kept him home from daycare Tuesday and noticed that his throat was starting to sound real hoarse. Allegies? I first called his pediatrician who told me that if it was croup, that it was a virus and there was nothing I could do about it except cool mist at night.

I called daycare this morning and asked if any toddlers were sick in his room. The assistant manager assured me no, that only one little boy had been kept home due to a starting cough. I had an OB appointment, and with Steve working nights (sleeping during the day), I had to drop Liam off at daycare. He was fever free and so I hoped he would have a good day. When I got to daycare, I told the assistant manager that I was going to call in an hour to see how he was doing and if he was miserable, I would pick him up.

When I walked into toddlers, 3 children were screaming, 1 was in the arms of an aid coughing up a storm and two other toddlers and walking around wining and coughing. Great! So much for no one being sick. I told them I was going to call after my doctors appointment to see if I should come pick him up. I called about 45 minutes later and they told me he was a little fussy but overall ok. I then got a call from then around 11:45 to say that he was coughing more but it was because he was laying down. I told them if it got worse, to call and I would come pick him up. I waited a couple of hours and then went and got him. They told me he had a much better afternoon  but didn't nap long or eat very much.

Usually he will drink water throughout the day. The last couple of days, he has been on and off refusing water. He has even been refusing watered down juice (which he gets as a treat and LOVES). All he has wanted was milk. Not to mention that his diaper rash is starting to look worse and worse. I gave him a baking soda bath, put him back in a disposable and lathered up the cream for the night. I have a cool mist humidifier going and so I hope that he will get some sleep (though hes been waking up every 15 minutes coughing so I am guessing its going to be a LONG night). I plan to sleep with both doors open so that I can listen out for him.

They say the second and third night are always the worst (and thankfully not contagious to adults) so I am hoping that by tomorrow, this should all be behind us... I'm hoping. Hes not labored in his breathing so I am hoping that this is a mild case. He is going to stay home from daycare tomorrow and having a mom-and-me day. Lots of morning fresh air and lots of cuddle time. As for the diaper rash.... the battle begins. Wish me luck!

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Baking, quick update and the importance of a schedule

It has been hard trying to figure out what to eat in the mornings. I decided to do some baking yesterday and baked a loaf of carrot/zucchini bread. It came out moist, delicious and was pretty easy to put together. The recipe made so much that I cut up the load into 14 slices and froze half for next week's breakfast. For those who are interested, the recipe can be found here (I added carrots to mine and omitted the nuts. I also did half whole wheat, half unbleached white flour). It was fun to bake but not like it used to be. My hands kept seizing up both as I grated and then stirred all the ingredients. Earlier, I had told my husband that I wanted to bake an apple pie, but in hindsight, I don't think I would be able to make the crust without a food processor. We are planing to get one in due time (a food processor, not an apple pie).

I saw my rhuemtologist for the first time yesterday. She was very nice and we sat for an hour, going over symptoms and medication.  She is putting me on a new medication called plaquenil (anti-maleria drug) and has referred me to an ophthalmologist (yet one more doctor) as it can cause eye damage in some. They like to do an eye exam within 3 months of when you start the medication and then have you go for checkups every 6 months. Thankfully, most eye damage that it does cause it reversed in 6 months if caught early and the medication is stopped. I made my appointment today for the ophthalmologist and they all seemed very nice in there. The converstation when something like:

Me: I would like to make an appoinment for an eye exam.
Receptionist: Routine?
Me: No, my rhuematologist referred me.
Receptionist: Oh, you must be starting plaquenil.
Me: Yup

We then preceded to talk about my condition and then it lead to small talk. She was very friendly and I just hope that the doctor is just as nice. My appointment, however isn't until the end of October, which I find a bit annoying. It is nice, however, that their office is right down the street from home, and in the same building as all my other doctors (minus my pcp).

Something that I forgot to mention in my last blog post about Liam; He is trying to eat with a fork! I have been giving him toddler forks and spoons to play with at dinner and last night he had pasta, chicken and spaghetti sauce. He was stabbing the food (not really getting much on there) and then putting it in his mouth. I am not sure if he is mimicking what the other toddlers are doing at daycare but its super cute!


I just wanted to end the post on the importance of keeping a schedule.We have been getting into a great schedule over the past two weeks and it has really helped with both Liam napping as well as sleeping through the night. He knows that he gets a bottle when he first wakes up, then downstairs for breakfast. He starts to get antsy around  the time when we are suppose to be heading to daycare. After daycare, we get home late afternoon and he knows dinner is at 5. Then is bath, sippy, and bed by 6/6:30.

This schedule works great except on the weekends when there is no daycare. Last weekend he was all confused and kept running over to the babygate to get out. I finally decided that we were to do our grocery shopping and he seemed happy to get out of the house. Also on the weekends, he still wakes up at 5:30/6am, which means, we are up as well. This provides us with the opportunity to eat breakfast together and then go for a morning walk before the sun gets too hot. Once work starts, I hope to stick to this schedule. It will be a little different Tuesdays and Thursdays (I go in earlier) but hopefully it won't be too much of an adjustment.

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13.5 months old! Daycare Update, First hair cut, 3 new molars

Ever write a blog post and it get lost in cyber land? Sorry for the delay. This will be try #2 for an update.

Liam is 13.5 months old and has been doing GREAT at daycare. He started out last Monday and was crying the entire time I was there with him. It made me so nervous to leave him but as the day progressed he had a great time. I didn't  even get a hug when I picked him up.

It is now into the second week and hes both eating and sleeping well. He gets excited to go to daycare but it still apprehensive when I leave. I treasure our mornings together which starts with him waking up any time between 5am and 6am, him cuddling with me with his morning bottle, breakfast, and then us listening to music while we either play with legos or "fold laundry" (which is really just Liam bunching clothes up in his lap or throwing them over the baby gate).

Our "new diet" has been going well and I did write a new blog post on it. This, too, got lost and so in due time I will write again about all the food choices we have changed to, as well as my new shopping routine and cooking strategies. But in short summary, we are eating well and I found a great new store: Trader Joes.

Liams lead levels came back and they are down another point! He now at a 9 (Steve's excellent post on our lead ordeal). As instructed, we are giving him fresh fruits and veggies along with a vitamin supplement with iron. I told his pediatrician that the vitamin was staining his teeth and we were instructed to brush right after he takes it. He loves his new Thomas tooth brush and once he starts his new daycare (September 30th), they will be brushing his teeth after lunch as well. (***Quick update on teeth... I just realized this morning that my little man has 3 more molars that have popped though! That makes the teeth count 11!)

My health is so much better and my nephrologist is thrilled. He says that I am a perfect patient and doesn't want to see me for another 3 weeks. I don't even have to have blood taken for another two weeks. My creatinine went down to one (normal range), and my blood protein is steadily increasing. I still have protein spilling out of the kidneys but he said that will be last thing that will resolve itself. I am also able to take less medication (1500 mg of cellcept, and 30mg of prednisone, half of what I was originally on when I started my medication). The only real complaint I have (besides the tremors, headaches, mood swings and palpatations) is that I have lost a ton of weight. I am down to 106lbs (from 135 I was when I was in the ER in June). He was not concerned and said that it was the prednisone that has increased my metabolic rate. I see my rheumatologist for the first time tomorrow and hopefully all goes well with that visit. I think the only real headache that I am dealing with is the insurance, which I feel I am on the phone to every day.

Work starts up again in two weeks and I am frantically trying to get everything done. We had a small issue with our garden (found an infestation of black nightshade growing by our house) but we are working to resolve that (See Steve's Blog Post). Liam got his first hair cut on Sunday and he now looks like a little boy (and not a little baby anymore).

Cloth Diapers: I finally found a good washing routine for our new washer! Before it was taking me HOURS to get them clean but now I have cut an entire hour off of the total time. Our machine is definitely a learning curve but what I have read, it is important to do a long pre-rinse cycle BEFORE you add the soap. This will ensure no ammonia buildup and no stinky diapers.

Cute moments: He has become very snuggley over the past two weeks, constantly climbing into my lap and sitting while we look at a book or toy. He "cleans off bubbles" in the bathtub if they are on his book and wiping and dipping his hand back into the bathwater until all the bubbles are gone. He even walks up to me, grabs my hand, and leads my around the room. He's growing up so fast but I am loving every new discovery he is making.

That is all for now. I am exhausted. Sorry for the short post. My posts will be getting less frequent as work approaches. I will probably start doing biweekly/monthly updates, unless something inspires me to write.

I will leave you all with a cute video of Liam walking around the park with Daddy.

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Sleeping through the night, Daycare, Processed Food Challenge

Happy August Everyone!

Liam Update: I feel like he's changing every day! Yesterday he got up from a sitting position all by himself and today h'es been doing more and more. He's into EVERYTHING and loves anything that makes sound. His puppy (that plays music) is his favorite. He will press an ear, hand or heart and wait for the songs to start. He's very smart and if my computer is on the couch, with my legs up (to block him), he will actually crawl under my legs to get to the computer. He loves books, bags and "organizing" . He actually loves anything on a string that he can drag around.

He usually has pancakes and fruit for breakfast (or egg and toast) and he will either sit down while watching Veggie tales and eat his breakfast (all on his own!). The other day he was eating strawberries in a little cup. The cup kept tipping over so he moved it to the exersaucer (which has a cup holder) and angled it so that it wouldn't tip over but that he could still get the fruit out. So smart!

He is sleeping through the night!!!! I say this with a tear because I didn't think it was possible. We put him to bed any time between 6-6:30pm and he usually wont wake up till 4:45. I usually will leave him till 5:30 (unless he is hysterical). This morning I gave him a bottle at 5 and put him back to sleep and didn't go up to get him till 6:30. This sometimes works... and sometimes he won't go back to sleep = cranky baby. A couple of times he has woken up at 10 pm (usually if he doesn't finish his bedtime bottle). If he doesn't go back to sleep after 10 minutes I will go in and give him the rest of his bottle which does the trick. I am hoping that I won't have to do that for long. How did it happen you ask? Well, one night I decided that when he wakes up, I was going to wait 10 minutes and see if he would go back to sleep. Nine o'clock rolled around and he woke up crying. I waited. Three minutes later, silence! It was wonderful. So now, my limit to wait is 15 minutes. If he hasn't gone to sleep by then, then he usually won't.

As far as naps, we are down to 1 nap a day but it is a struggle. He is so cranky and tired by 12, hes not sleeping as long as he was when he was taking two naps. But I don't want to go back to 2 naps because we have decided to start him early at daycare. Monday will be the start of daycare and it will give me a chance to get ready for school for the fall semester. It's very hard to work with him around. When I am on the computer, he wants to pound on the keys. The only thing that distracts him is Veggie Tales (and I don't want to play that ALL day).

Cloth Diapers: We are back in cloth diapers and so far so good. Washing them has become a challenge as I am still learning how much detergent and water to use with the HE machine. Washing uses less water than our old machine but the process now takes twice as long. Drying also takes longer but I am letting them air dry outside instead.

Health Update: I had a doctors appointment this past Tuesday, and got my blood results back the next day. My creatinine is now down to 1.2 and my protein is down to 3mg from 9! He also said that my potassium is now low and that I need to incorporate that back into my diet (with pleasure!). I am to stay on my low sodium diet (which I will go into more detail below) and I am ok with that. I am feeling a bit better with all the medication and I have been trying to go for small walks early in the morning (when the sun is low, with a hat and sunscreen). Some days my joints hurt or seize up but I am seeing my rheumatologist in two weeks. They will probably put me on more medication to keep the lupus at bay but I will wait and see what he says. Besides the joint pain and muscle spasms, I am also experiencing heart palpitations and tremors. This is "all normal side effects" from the medication but it is rather annoying. I can't wait till they can tone down my pills.

One thing my doctor was concerned about was my white blood cell count. He told me that I was at 2mg, where as a healthy person is at 3000-4,500mg. I am not healing very well with any cut and I am very susceptible to getting sick. He told me to stay away from malls, busy stores and crowds. We did go to the library yesterday but it wasn't crowed and I didn't go near anyone.

Processed Food Challenge: Due to my low sodium diet, I have been a hawk at watching labels. Then this study came out: http://www.whydontyoutrythis.com/2013/06/scientists-officially-link-processed-foods-to-autoimmune-disease.html. They have officially linked processed foods to autoimmune disease, specifically the processed salts in foods! So Steve (husband) and I have decided to change our diet. This change won't happen over night but as we learn what to eat, we are hoping to live a better, healthier lifestyle. We are not going to go completely raw (as we are both carnivores at heart). We also are not going to cut out all sugar or flour just yet. Baby Steps. We are going to make our own sauces, pancakes, bread, and stop buying boxed/canned foods. We are also going to try and increase our produce intake. Wish us luck!

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13 Months at Ashton Farms

Last week I was down at my moms. She was helping me take care of Liam and giving me a break from cooking and cleaning. On Saturday, Liams 13 month birthday, we decided to visit a close family friend, Wendy, who owns a 40 acre farm. I have been going to the farm since I was a little girl, and I was excited to bring my son there. He had a blast. He went in a pool for the first time (I was able to be in the shade in the pool for most of the time) and he got to see puppies, horses, donkeys and chickens. He was a bit unsure of the dogs but wasn't phased by the horses, donkeys or chickens. Below are some photos from the day.

First time in the pool. Stuart (husband of Wendy and one of the owners of the Farm) was holding him.

Liam thought that my hat was hilarious and kept trying to take it off.

A walk down by the pond.

Liam with Grandma

And below are some photos of when I was a little girl at the farm. They are taken in 1995 and 1996. I would have been between 11 and 12.

Me brushing a little Shetland pony that belonged to the farm.

My Cousins and I fishing down by the pond. I was very much into horses and fishing. I am the one holding the little sunny.

Me doing a flip into the pool.

Me and a little horse named Chas that I took care of over the summer. He was a great horse.

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13 months old (almost)!

This coming Saturday, Liam is turning 13 months! This whole week we have been down at Grandma's house, getting spoiled.

An update on sleeping. It has been going well. At home we are down to one waking a night! It is usually about 2:30/3am. He does still wake at other times but will cry for about 3 minutes and drift right back off to sleep. However, at Grandma's, sleep is not as good since we are in the same room. I am going to try the couch tonight and see if we will sleep a bit better. His bedtime is still 6/6:30 and wakeup is about 5:30/6am. Naps are great and he usually takes two (1 at 9am, and 1 at 2pm). I am not sure how I am going to adjust him to just one nap.

Liam's diaper rash is all cleared up but he is still in disposable, since we are at Grandmas. Once we are home again, back in the cloth he'll go. My husband is getting the house all cleaned up, lead free and doing odd/ends that needed done (changing out lights, putting things in the attic, caulking the bathroom, etc).

We had the health inspector in on Monday and they are pretty sure that it is the dust causing the problems. They are going to test the dust and do a soil test around the house this coming Tuesday.  Thankfully, Liams lead number dropped to 10. I will be happy when its below 5 but at least it is not going UP.

My numbers are also improving. I got a call Tuesday saying that my creatinine was down to 1.5 (from 2.2) and that my potassium finally dropped to 4.9 (within normal range). I am seeing him again this coming Tuesday. Due to digestive issues (a common side affect), he has readjusted my cellcept again and put me on a probiotic.

I have been doing a lot of reading and came across an excellent uplifting article: Winning the war against lupus: is a cure in site? They give an interview with Dr. Hughes who Hughes syndrome (a close cousin of lupus) was named after. It is his opinion that we have "95 percent of a cure" and that we should have a cure for lupus within the next 20 years. This gives me hope.

I also came across a lupus page listing famous celebrities with Lupus. A few top names include (no particular order):
1. Mariah Carey's husband, Nick Cannon
2. Toni Braxon, singer
3. Beethoven
4. Michael and John Wayne (actors)
5. Trick Daddy, singer
There are many more mentioned.

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Diaper Rash from Hell **UPDATED**

Well we have been battling a severe diaper rash for 3 days now. He cries at every diaper change and it breaks my heart. It started on Thursday and has not let up. It almost looks like a chemical burn on his poor little butt.

We took him to the doctor who prescribed him 1% hydrocortisone cream twice a day, triple paste, and probiotics. I have been putting on the coconut oil between changes and giving him baking soda baths.

As suggested by many, we have also been giving him lots of "naked time". Because of all the creams (and due to our washing machine dying), we have been putting him in disposable diapers (which I can't help but think that it's making it worse). Lets hope this clears up within the next day or so! I hate seeing him in so much pain.

Possible causes: 
1. Ammonia buildup from cloth diapers (once we get the new machine, I plan to "strip" them and try again)
2. Teething
3. Acidic poop from too much tomato sauce

UPDATE: Monday, July 22, and his rash is looking so much better. The coconut oil is really helping as well as the triple paste. This should be all cleared by Wednesday!

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Health Update

Happy Friday Everyone! To the left is a photo of Liam with my headband on his head. He saw me wearing it and insisted that he have it on his head. Apparently, when I was younger, I was obsessed with them. Like mother like son. :)

Lead update: We are still trying to control the dust in the home, cleaning every couple of days and wiping down sills. He had another blood test Wednesday (per doctors request) and hopefully we will have the results today (probably Monday). We are also thinking of arranging for lead testing in the house which will hopefully happen sometime soon. The local health inspector showed up today with some information and will be stopping by Monday with a giant questionnaire for us.

Liam update: Well, little man has diarrhea and a horrible diaper rash. We have a doctors appointment today to have it looked at and to discuss more about the lead. They think the rash could be due to teething, stomach bug, or just a high volume of fruits/veggies. I wasn't sure if there was an ammonia buildup in his cloth diapers and so I have put him in disposable with tons of A&D. The washer broke last night and with all the diarrhea, I know I am not going to be able to keep up with him in cloth.

He has been walking more than crawling and climbing all over me. Sleeping has not been any better at night and with his diaper rash, he was with us in the bed all night last night. I just couldn't listen to him cry when I knew he was in pain from the rash.

Lupus Update: My ANA score is negative! ANA stands for auto-antibodies or antinuclear antibodies. They are antibodies that the body creates to attack healthy tissues (see here for excellent explanation and examples of scores). That means that they have suppressed the lupus from attacking my kidneys. The next step is to get my kidneys back and working.

When I had the initial blood test, my creatinine was 1.4. 1 week later it was at 1.8 and 1 week after that it was 2.2. After that it has been consistent at 2.0. At last weeks blood test, it had drop down to 1.6! He was happy and is having me do another blood test this coming Monday. My protein levels are back within normal range but my potassium remains high and my calcium remain low.

I went and saw a dietitian yesterday at the hospital. She was very nice and could see how overwhelmed I was becoming with everything. Liam was in a cruddy mood (had not napped all day, had diaper rash) and so he was a handful. We sat down and talked about the sodium/potassium restriction and came up with a plan:
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2000 mg potassium a day
2000 mg sodium a day
7 oz protein
8 servings of grain
5 servings of fruit/veggie
1 serving of diary
1 serving of non-dairy (i.e. sorbet)
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She wants me to eat a protein at every meal to keep up my energy (due to the steroids) and she said when I get hungry, snack on gummy bears, sweedish fish, or jelly beans (my dentist is going to love that). I was surprised how much a serving is, especially with meat. 4 oz is about the palm of my hand  (half a chicken breast). An egg is 1oz. The main thing that I was going wrong with was whole wheat. Whole wheat bread has about 70 mg of potassium vs 35 mg for white bread. That means, no whole wheat for me until my potassium gets better. I am hoping to still find a way to eat somewhat healthy while on this damn kidney diet and hope that I can get off of it soon.

Little man just woke up from his nap. Time to head to the doctors.

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12.5 Months Old: Lead Update, Night waking, Health Update

Liam is 12.5 months old and a ball of energy! He is tiring both Steve and I out every day and he is walking like a champ! He has become mommy's little helper, organizing laundry (as only a toddler can, by putting it in and out of the same draw over and over and over) and overall, he is a happy little boy.

Last week he went for his blood lead test as well as his anemia test. Unfortunately, and very scarily,  the blood test came back higher than the finger prick test (finger prick 5.5, blood test 11). The doctor called us on Friday afternoon, concerned, and told us that she was calling in a referral to the State to have them look into our home for possible causes. My heart sank. We had tested everything! There wasn't anything he was touching and all the paint came back negative. The only thing in the room that we thought it could be was this ugly hanging lamp that we quickly took down. The AC had been blowing past it for weeks and maybe it was giving off lead dust... maybe?

So now we wait for the State to do their testing and see what the outcome is. As far as Liam's health, he is on a high iron diet (he came back positive for anemia) as well as high calcium and vitamin C. They are afraid of the lead getting into his bones and so this new diet is suppose to help. He is now also on a high fiber diet because my poor little man is so constipated from the iron supplements.

Nap time has been going great! We have gotten into a morning routine and its been working out pretty well. Get up, watch veggie tales, eat breakfast, play and then nap. Nap is anywhere from 8-9am (since he's usually up at 5:30 or 6am). He has a sippy of milk, I tell him a story (Little Blue Truck) and then say, OK nap time! Night night mommy, night night daddy. I put him in his crib, turn on his glowing sea horse, his sound machine and walk out. Done! He talks to himself for a little bit but then he goes right to sleep. No crying! Repeat for his afternoon nap. He usually goes down just as well for bed and the only thing that we add to that routine is a bath.

Night waking, however, is not going very well. He has been very constipated and was waking up in pain. He was also drinking a ton of milk during the night (6oz). Last night we cut the milk back to 4oz and he slept with us half the night. I am hoping that once he gets on a higher fiber diet, his belly issues will be better and he will sleep much better at night. We have decided to cut out the first night wakening (within reason). He sometimes wakes up at 9/10pm. I am hoping to let him fuss it out a bit and see if he will go back to sleep. Last night we attempted this but he woke up with a pain in his cry that was just not himself. I went up there, cuddled him and he went right back to sleep (only to wake up 2 hours later). It was a long night of crying and cuddling. Hopefully tonight will be better.

Update on my health: I have come to the epiphany that I may have had a mild form of lupus for 8 years! Starting my sophomore year of college in FL (2004/2005), I developed a rash on my side, by my bikini line. It would start out like little red itchy spots and then grow into one giant scaly spot, then heal. It would come and go, like a cold sore would, and so I thought it was just something related to stress or a virus. I went to the dermatologist who said I was allergic to a detergent. I insisted that I wasn't and had a biopsy taken. I was afraid of scabies or shingles. Nothing ever came about the biopsy and she gave me some steroid cream to get rid of it (which helped).

Fast forward to the present. I still would get what I called "my itchies". My roommate knew about them, as well as my mom, my sister and my husband. My husband always told me "Stop scratching! You are making it worse!" but the itch would go right down deep. I never thought to mention my "itches" to the doctor because, again, I didn't think it was important. I was on Facebook, reading an article about lupus affecting the skin and noticed the photos. They look JUST like my itches. Then I read "Subacute cutaneous lupus lesions: The first type looks like red pimples when the rash first comes out; as the rash persists, these pimples become bigger, and scales appear as the rash persists. Patients complain about the rash being very itchy." I was shocked. I looked down at my side and realized that I had had an outbreak of my "itches" at the same time as the swelling.... it all fit. Why did lupus decide to start up in college... who knows. Why did it decide to start attacking my kidneys after 8 years? Again... mystery. I do know that I never did get an outbreak of "itches" when I was pregnant, which they say [pregnancy] can put lupus into remission temporarily.

Physically, how am I doing? I am still very tired but each day is a little better. I do get the shakes, especially when I do not eat and so I need to stay on top of snacking throughout the day. New symptoms that I am having include tingling and muscle spasms, which are all due to the medication.

I just got back from a doctors apt with positive news. My Ana test (antinuclear antibodies) which was positive at the start of all of this has now gone back to negative! This means that so far, they have stopped the attack on my kidneys. Now I just need to get my kidneys back in working order. I do have high blood pressure from all the medication and so I have been put on a blood pressure pill but I have been taken off of the water pill. The last change he made was to increase my cellcept (anti-rejection medication) to 6 pills a day instead of 4.

My diet is still the same (low potassium, low sodium) and so I have asked to see a dietitian. The low sodium is not that hard to follow but I am having a hard time knowing what to eat with the low potassium. I found a great Kidney Diet website called http://www.davita.com/recipes/ and they have tons of ideas for low sodium, low potassium. 

Emotionally, how am I doing? Each day is getting better. It's still hard to face that I will be making life long changes but I am accepting it. The issue with Liam and the lead is currently a distraction from my own problems but not one I really would like to be dealing with. I am really happy that I have such a support group surrounding me and such an understanding, patient, and loving husband. He really has been wonderful helping me through all of this.

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Part Three: Liam's First Birthday, Walking, 7 teeth, Weaning, Poor Sleep, Lead

Liam and Grandma V

This is a much needed update and I am sorry to all my readers for it being SO late. A LOT has happened in the past couple of weeks, with both myself and my little toddler.

First Birthday: At the end of this post I will have more birthday photos. He had a great first birthday at his Grandma Vs, considering the circumstances. We were going to throw another at my moms but I was just too sick and wiped out. His first taste of cake was Strawberry Short Cake (my favorite!) and he LOVED it. He didn't want to let go of the spoon the entire time (we kept the spoon). He did get his hands dirty in cake but it wasn't an all-out mess. Next year will be different.

He received some great presents, including a singing toucan flashlight, bedroom glowing sea-horse, Legos, clothes, and stacking cups (to name a few). He got to spend time with his Great Aunt and Great Grandma and had a really great day. Later, during our trip to see family, my mom (Grandma S) got him his first pair of shoes (Nike sandals), his first chair (see pic below) and tons of clothes. All in all, I think he had a great first birthday.


Milestones: We have a walker! Liam took his first steps for Daddy on July 3rd and more on July 4th. He still prefers to crawl but will walk from one stationary object to the next. He becomes very proud of himself when he does walk and very upset when he falls but he's doing such a great job.

He is "talking" up a storm, mostly saying "yaya", "dada", "momma", "baba" and baby gibberish. He points, sings, and just is such an animated little boy. His personality really is starting to shine through. We taught him to share but he is still getting used to the idea of giving something up. He will hand an object to me but will still want it and take it back. It's pretty cute. He is also understanding more phrases. He knows the word no (and will yell "YA" back), he know "Give it to me" or "Let me see" and he will pass something to me. He is also getting into shows a bit more. His favorite are Veggie Tales and the Despicable Me 2 Trailer Banana Song. He could watch them over and over and over.

I noticed last night (a bit late) that he has his 7th tooth (probably about 1 week old) and the doctor says that his back right molar is coming in as well.

Weaning: I am going to right a separate post on weaning but here is a breakdown of how it is going. As of June 25th, Liam was weaned cold turkey off the breast. I would NOT recommend this to anyone unless you have a great support team AND it was medically necessary.  I am still very emotional over it and so is he. There are days where he will take the sippy cup with no problem, and there are days where he will throw it at me and pull up my shirt. Things are slowly getting better but those first few days were rough. He doesn't like the taste of cows milk and so I am mixing in my frozen stash. I currently have about 130 oz that I am going to try and space out. I haven't pumped in about 1 week and its still pretty uncomfortable (I will spare you all details).

Naps and Bedtime: Naps are a daily battle. Some days are great and he will sleep for 2 hours in the morning, an hour in the afternoon. Other days, he won't nap. Bedtime, however, has become a bear. He goes down relatively well but his night wakings are wearing me thin. The next couple of weeks, we are going to have to come up with something new. I am still in the process of figuring that one out.

Doctor's Visit: Well he had a great visit minus a couple of issues. Good news first: he is just under 25lbs (90 percentile), 32" long (98 percentile) and on cue for all his milestones. Bad news: He is anemic and has elevated lead levels. His finger prick test came back at 9.9 for hemoglobin and 5.5 for lead levels. We have searched the house and have discovered door nobs that are positive for lead, as well as hinges and a lamp. We are planing on hiring an expert to walk through our home to access our options and look to see if there was anything else that we may have missed. We are pretty sure that the water is lead free but we are testing that next. 

So that is the update thus far. I am sure I have missed something here or there but I will be trying to make more frequent updates as things calm down.

 

 

Liam's First Steps for Daddy!

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Part One: Liam's First Birthday, ER stay

To all my readers, friends and family: These last couple of weeks have been an emotional time. Two weeks before Liam's first birthday, I started experiencing extreme swelling in my legs. I went to the doctor on Sunday and got blood work on Monday. By Thursday, June 20th, the swelling was so bad that it hurt to walk and I insisted on the doctor calling me back regarding my results. I was also concerned because I had gained close to 20lbs in two weeks. My husband and I were sitting down discussing dinner when I got a call back from the nurse. She told me that the doctor had looked over my blood work and that I was to go to head to the ER that very night. I was in total shock.

I went back and forth with my husband, giving pros and cons of going. Besides the swelling, I felt FINE. We instead decided to head over to the doctors office to get more details. We packed up Liam and headed out the door. I really didn't think I would be spending the next 18 hours in the ER. Five minutes down the road, we got to the doctors office and I immediately saw the nurse who had called. She told me that my kidney numbers were abnormal and that my doctor was pretty adamant about me going to the hospital. So off to the hospital we went. I checked into the ER (poor Liam didn't have a diaper bag) and we spent the next 18 hours waiting for answers. That was the first night away from my baby in almost 1 whole year. It sucked. Steve had gone home with Liam to get him diapers, food and my breast pump. Due to the sanitary conditions of the ER, I had decided to pump and dump.  We decided that the ER was no place for Liam that night and so Steve went back home. He was in for a very long night of bottle feeding (my little nursling still nursed 2-3 during the night).

More blood was taken and at 1:30am I was visited by a doctor who was explained to me what was happening to my kidneys (he even drew me pictures). Basically, they were sick and dumping out insane amounts of protein into my urine. My osmotic balance was all out of whack, hence the swelling. I finally got admitted to a room later the next day and was able to see a kidney specialist. I was told that I was not allowed to see an actual specialist until I was in a proper room.

Thankfully the hospital has free wifi and so I was able to facetime with my baby, tell him a story and talk to all my family during the wait. When the doctor finally came in, Steve (husband) was there and so we all sat down to chat. He started asking me questions about the swelling and then he looked at my face. He asked, "How long have you had that rash on your nose?" I told him about a month and that I thought it was either sunburn or healing poison ivy. He assured me that if it was either, it would have healed by now and then adds "See, you ask the right questions, you get the right answers". Then he asked if I had any joint pain. I told him, yes all the time. Sometimes it hurts so bad, I can't walk or even hold my son, but then it just goes away. I told him I thought it was due to my son being so heavy. The doctor just starts nodding.  I couldn't believe this was all connected. The doctor told me that my blood count was low and that I was anemic. He then drops the bomb.... we are about 90% sure you have Lupus.

LUPUS!? I can't have Lupus. Even my husband blurts out, "It's never Lupus" from a tell tale "House" quote. This was Friday, June 22nd. The kidney doctor wanted me to stay in the hospital till Tuesday for a kidney biopsy (which ended up getting moved to Wednesday) to make sure it was Lupus but I wanted out that very day. He "compromised" and gave me a giant private room so I could pump in peace. He wanted to monitor my kidneys and make sure I wasn't getting worse by the minute. More blood was taken (every 6 hours) and  I was also sent for an ultrasound of my kidneys. By Saturday afternoon, I was allowed to leave... for now. My mother and mother-in-law were on their way up from NJ and I was scheduled for a doctors visit Monday, June 24th.

The next couple of days flew by. After my Monday doctor visit, I was told I will have to wean my son. Not in a month, not when I was ready and not even when he was ready. I was to wean him that very next day (Tuesday, June 25th)... cold turkey. They wanted me on steroids and this would go directly into the breast milk. Not only was the nephologist telling me this, but so was my pediatrician, and my OB. That was my breaking point. This was really happening. And I cried. I didn't care that I could possibly have Lupus. I wasn't ready to break that bond with my son. One week later and I am still not ok (but I will write an entire post on my weaning experience).

I went in on Wednesday for my kidney biopsy. It was exactly one year that I was back in that hospital, in the same wing and same hospital gown. I got the biopsy done at 3pm and was discharged the next day, on Liam's birthday at 11am. The biopsy wasn't too bad but I got pretty sick on the pain medication after. I was placed on 24 hour bedrest (the worst EVER) and was monitored every 30 minutes for a couple of hours, then every hour and then every 2 hours. The kidney doctor told me that they were sending my slides down to Columbia University and that we would have results by Friday... more waiting.

I am tired and my little one will probably wake up for his bottle soon. This ends Part One.

Part two will be written shortly and will  include my final diagnosis. I plan to also write a separate post on Liam's first Birthday Party at his grandmas.

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